Primary Lateral Sclerosis

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originally posted 12-14-2008

I’ve been writing a lot lately on the topic of pain and suffering and what this tells us about God. Some of my conclusions, I’m certain, are not popular, but I write from the perspective of one who has been suffering  since the fall of 2007 and not as a casual observer. Even so, I am sure that even those who share in my suffering will find much to disagree with. I only ask that you be considerate in your objections. The suffering that I write about is caused by a disease called Primary Lateral Sclerosis; or PLS for short. At least that’s what my neurologist is calling it.  The bare-bones basic explanation is that I am slowly becoming paralyzed. This is a process which will take decades and will eventually spread from my legs to my arms and possibly (although not garunteed) to my speech and swallowing muscles.

What does PLS look and feel like?

The primary symptoms are spasticity, weakness and a loss of balance. This causes a wide range of secondary symptoms including painful muscle cramps (in my calves, thighs, toes, and feet).  

My primary symptom is spasticity of the legs, and this is what makes it difficult for me to walk. Spasticity can be defined as an increase in the normal tension of a muscle, resulting in continuous resistance to movement. In other words, it is an involuntary and continuous muscle contraction. The best way to describe what is going on is that opposing muscles are pulling in opposite directions. When you flex your biceps, your triceps are supposed to relax, allowing your forearm to bend up toward your shoulder. With spasticity, instead of relaxing when you flex your biceps, your triceps engage and pull your arm back down. The simultaneous engagement of opposing muscles makes movement difficult. The result is that I feel like I am walking through water. This constant resistance to movement results in  cramps as my legs.

PLS and ALS (Amyotrophic Lateral Sclerosis A.K.A. Lou Gehrig’s Disease)

PLS is a motor neuron disease in the same family as Amyotrophic Lateral Sclerosis (also known as ALS or Lou Gehrig’s disease). The difference between PLS and ALS can be complicated (it involves lower motor neurons vs. upper motor neurons) but the short explanation is that I get to live. Here is a useful diagram that illustrates the different nerve tracts affected in PLS and ALS:

 

 

So as you see from this chart, PLS affects the upper motor neurons and not the lower motor neurons. The differentiation between upper and lower motor neurons does not have anything to do with the upper/lower parts of the body, but rather, where the motor neuron is located within the motor system. The upper motor neurons send messages and signals to the limbs by passing through the corticospinal tracts (where my damage has occurred) down to the lower motor neurons. When the lower motor neurons are directly damaged, you have ALS.

 What causes PLS?

The exact cause of PLS is unknown. The symptoms however, are caused by scarring (sclerosis) of the lateral tracts of the spinal cord.

PLS and life expectancy

Life expectancy is Normal in PLS since it does not affect the lower motor neurons like ALS does. However, life can be shortened by falls caused by weakness and loss of balance. While PLS is not life threatening, it is life altering.

Frequency of PLS

PLS is often misdiagnosed by neurologists who do not take the proper steps to accurately rule out other diseases (such as Multiple Sclerosis and ALS). As a result, the exact frequency is unknown, but most experts put the number of people living with PLS in the United States at about 500.

 

173 thoughts on “Primary Lateral Sclerosis

  1. Wazzzzzzzup Aaron!!!!!!!! I’m just kickin’ back right and reading through this site again. I think you changed this page a little eh? Didn’t it used to have more on it? Something about computer networks and how that acts like nerve signals and such? Anyway bro I’m wanting to start our chats again. How are you feeling? Any news? I hope you get better man. I’m going to start writing more because it lets me get my thoughts out. Would you mind teaching me to write? Let’s do pizza at pizzicato again. This time I’ll buy. Hit me up. You still have my cell number?

  2. Anonymous

    maybe there is a cure..never give up..

  3. roberta

    pls Doctor thinks In the summer time my body get over heated . I have no energy at all. In the winter my body gets like a snowman. I have a lot of trouble walking and pain in my upper back . does anyone have this trouble?

    • wanda bates

      i guess you could say i do..i have looked alot of things up as i have go wrong with me and summer,i sweat so bad i cannot get cool at all,and face and body stays flushed red most of the time.even winter time i still flushed alot,blood pressure went up high. my neurologist in birmingham,alabama says that you dont hurt with primary lateral sclerosis or polymyositis,i have them both,but thats strange,every time i read that someone has one or either of these ,they say they hurt alot. he tries to say my pain is coming from fibromyalgia. i am not happy with this dr but he is the only specialist in my area for pls or motor neuron diseases.mine started in my swallowing muscles first,eating made me cough really bad,now after 4 years,i have had rectal prolapse surgery,from all the coughing and slow motility in colon,acid reflux surgery,from the muscle that controls the opening of the flap that lets acid get back up in esophagus,carpul tunnel surgery,just had to have a colostomy where my colon had stopped functioning because the nerves going out in them,and bladder is going out also..my colon doc says its from the motor neuron disease,there is no other reason for it to have happened other then the pls..i feel like an alien from another planet because when you have something so rare no one knows what to do or say to you about it.now im 3 weeks into my surgery recovery and i feel like crap all the time,cannot sleep,legs and arms hurt so bad muscle relaxers or valums will not help me to sleep without waking up constantly..cannot take it much more ,i am already thinking that dieing would not be real hard on me right now,the only thing that keeps me going are my kids,grandson and husband..but still even with them ,its only so much pain i can take before i just have to say thats enough..docs do not like to give you much pain meds but im not worried about getting addicted,im worried about wanting to die from hurting this bad..i know i am not alone,but it sure seems like it sometimes..

    • paul singer

      Hi Roberta. I have had pls since 2004. Upper back pain is constant and moderate to severe. The best and really only way to deal with it is to turn it over to the Great Physician (Jesus). Believe on Him and you will be saved. I am 100% convinced that knowing Jesus and studying the Bible is the only solution to life’s problems. The closer your walk with the Lord, the more you will focus on Him and the less you will focus on your pain and circumstances. God Bless you.

      • Thanks Paul. I hope all is going well with you.

  4. Roberta, first of all thank you for stopping by and reading this page. I am so sorry that you have PLS. I know what you are feeling. How long have you had PLS?

    The way my neurologist explained this is that our spasticity increases in the hot weather, which makes our legs feel like jello and makes them very weak. This also increases the painful cramping- at least in my case it does. The pain in your back is probably not a primary symptom of PLS, but a result of a poor posture which comes from trying to compensate for our ever increasing weakness.

    Has your neurologist prescribed any pain meds for you?

    There is a good paper on pain in motor neuron disease here that I found about a year ago. It won’t make you feel better but might answer some questions.

    God bless you in your journey. I’ll be praying for you.

    • Sami Jo Magoffin

      I have severe DJD in L cervical spine. The pain comes a few days and then with use of TENS, ROM, and sometimes a good PT I can manage again. I am wondering if that and other pains coincide with worsening of disease. Thanks for the PLS pain article…very informative. I love the Christian basis in this PLS chat site. I am an Anglican Deacon. I had finally to retire and close my PT/OT Clinic at end of 2014 due to multiple pains, weakness and difficulty caring for patients.

      • Sami thanks for sharing your story. I would always love to hear more of how you are dealing with your illness and how God is meeting you in your suffering.

  5. roberta

    Thank you aaron for writing to me. My neurolist saic it might be hsp the complicated kind or pls I see my Doctor every six months. I take fexilol 10mg but i don’t take them alot because it make me tired. I have been reading alot on pls and hsp to know more about it. My body is getting weaker and weaker every day.
    God bless you and thank you

    • vickie lyons

      god bless all of you

  6. You’re welcome Roberta. It was my pleasure. My neurologist considered Hereditary Spastic Paraplegia as well when I was being diagnosed. As you know the two diseases are very similar and essentially have the same outcome. I understand about the progressive weakness. I wish you didn’t have to experience it.

  7. Anonymous

    Do you happen to know if chemotherapy has anything to do with pls. My mother was diagnosed with ovarian cancer.. She had taxotere, cisplatin and another one that I am not sure of. 18 months after the chemo she showed signs of pls. Do you know of any correlation between the 2?

    • I’m sorry to hear of your mother’s cancer and current health problems. As far as I know there is no connection between chemo and PLS. It would be an interesting theory to pursue however.

  8. Dolly

    lm am a lady of 52 yrs.lm seing a physio she is telling me that some patients do improve thier walking,by doing stratch exercise,do the stratching improve your walking or she just want to make me happy with my PLS

    l was exeperienceing cremps,pins and needles,tung biting and swallowing and leg shaking,all this has stopped what sign is it.l realy needs my walking back.

    • Hello Dolly, My apologies for not replying quickly. I have found that stretching and excercise does help. The problem is always finding the energy to do that! Also, after long periods of inactivity, once you start stretching and excercising again you go through the usual soreness- which can be discouraging because it feels like it is just getting worse. However, after a few days of this the soreness should start to lessen as your body starts to get used to moving again. Both stretching and excercise are good for us; I certainly don’t do enough of either.

      • Eric

        Greetings All,
        Stretching has helped me in a number of ways – increased mobility (noticeably, not dramatically), to more easily relax my muscles. and in range of motion.

        • Eric you are absolutely correct. Stretching is a great way to increase mobility. I don’t do it often enough but when I do I feel better. Thanks for the suggestion!

  9. Crystal

    Was diagnosed 2007 John Hopkins with PLS sad alot of Drs. aren’t that familiar with it.
    My spasm in the calves I used to scream. My mother bought me a hot tub it helps some but sometimes you need the stronger medications to get your legs able to move again. I was wondering does anyone who has PLS on here just feel exhausted one day and can’t get out of bed and want everything and no one to bother you then you are o k the next day? God is still in the healing business will pray for you all.

    • Scott M. Meadows

      Crystal, I’m just now reading this, thought this may help
      It really does me. I have found that if I drink at least 4 bottles of water a day it greatly reduces the spasms cramping in my calves. I hope this helps you! Scott M.

      • Scott this is an excellent point- drinking water helps reduce cramping in general so if we are not getting enough water we run the risk of adding even more cramping. I have also found that drinking water significantly decreases the frequency and degree of cramping I have.

      • Sami Jo Magoffin

        I used to grab my water but my MD found I was lowering my sodium…especially on a warm/hot day. He asked me to grab gatorade (I drink G-2) instead. It has helped a bit to quench my need for hydration.

    • Crystal, I am sorry to hear of your battle with PLS. I can relate to the spasms and cramping and wanting to scream! I don’t have a hot tub but have found that warm showers help with the spasms. I am not taking medicince anymore for the spasticity because of the effect it has on my mental awareness and energy. The baclofen certainly helped, but made me very tired all of the time. I understand about not wanting to get out of bed some days. I wold encourage you to push through it! I have heard from many people who start to get depressed and this only contributes to not wanting to get out of bed in addition to the pain which is enough reason in itself to not want to move. I will be praying for you.

      • Eric

        What my doctors have said are low doses of Baclofen, warm showers, and light massage have helped to lessen the spasms.

        Included in my prayers are all others who have PLS. I sometimes yell in frustration, and regain calm through prayer, thanking God for the love and grace in this world.

        • Eric thank you for the prayers. I am convinced that it is the prayers of others which keeps me enduring this disease. I understand the frustration and like you, am thankful for God’s grace. I certainly lack in grace at times as well. I’m glad there is forgiveness and that he who began a good work within us as promised to carry it on to completion.

  10. Dave Gartley

    I am in canada,do you know how many people have pls here? I was told that this is what I have,time will tell!

    • Carrin

      Dave, I have a friend here in Ontario, Canada just diagnosed with ALS; however, when I read about PLS I am wondering how do they know which one. Also what about Lymes?

      Have you found any resources in Canada??
      C.

      • Hello Carrin, PLS and ALS are closely related ( both being motor neuron diseases). However, ALS attacks the lower motor neurons as well as the upper motor neurons. If your friend is having lower motor neuron symptoms it is likely ALS. The lower motor neuron symptoms include muscle atrophy, fasciculations, and eventually respiatory failure. ALS also tends to progress quickly over a few years resulting in death after 2-5 years whereas PLS progresses slowly over decades (usually) and does not result in death.

    • David Hopkins

      Hello Dave, I live in Calgary and I was recently diagnosed with PLS. My doctor indicates there are 9 people in Calgary with PLS.

    • Dave, I am not personally familiar with anyone in Canada with PLS, but I am confident that there are some. Have you found the website called Patients Like Me? There is a thriving PLS community there. You may be able to meet someone close by. What part of Canada? I live in Oregon, USA- just a few hours south of BC

  11. I was misdiagnosed with progressive MS in 2009. After referral to a world-renowned neurologist at Barrow Neurological Center in Phoenix who specializes in MS, it was evident to him that I did not have MS. Took over a year or so of other tests before he finally concluded that it was PLS. I have all the symptoms but the major one is moderate to severe pain. So I can really relate to what you wrote. I would like to read about more of your experiences if it helps you to heal. At any rate, thanks for the excellent overview. I wish you the best and infinite blessings —

    Judy

    • Marsha

      Hi Judy, I also am in AZ and was diagnosed with PLS last year. I am 65 and have a lot of stress in my life from family. PLS has greatly affected me as far as walking. I use a walker but can see where a wheelchair would be better.I have a baclofen pump and it helps with pain but not my walking. Trying to get my mind right and accept all of this. Marsha

    • Judy, I have heard so many horror stories about people being misdiagnosed. I was shocked when I first started exhibiting symptoms at just how little we know. A lot of neurological diagnosis is subjective. MS should have been obvious though given the requirement for demyelination which shows up in an MRI. It just goes to show how little we know and how much of this process is simply a best guess. Blessings to you as well.

      • Eric

        Hello Marsha and Judy and Teleia Philia, My first noticeable symptom was an odd limp in early 2012, with the first diagnosis being Sciatica with a treatment of lower back P.T. As symptoms increased, one doctor even brought up middle aged dementia as though I was imagining things. On an out of state trip I visited an urgent care facility, and in the first 2-3 minutes that doctor shook his head in disbelief, and referred me to a neurologist. Testing, diagnosis, and helpful information went well from that point, though it was more than months on until I was given a diagnosis of PLS.

        • Ah… yes . . . the limp. I am familiar with that. I have not had sciatica but have heard that it not one to be desired.

  12. merrilyn

    i am a carer for my partner who has pls. he does not have any pain or spasams. he has got to the stage that he cannot speak or walk i have to have a lifter to transfer his he has been getting worse in the last 2 years drs think he may have had pls for 10years. he has a baclofen pump but it has really not been a success his swallowing is just starting to deteriate but he does dribble quite a bit. the only thing he can do is he still feeds himself but no for much longer.

    • Merrilyn, What a blessing you must be to him! I am sure he appreciates you a lot and the sacrifices you make for him on a daily basis. My wife is an amazingly patient woman and has chosen to travel this path with me. I would be at a loss without her help. Carers are special people and should be honored as such. I hear so many stories of how a person is abandoned by their spouse after discovering how much work is involved. Those who remain faithful are among the most honerable people in the world.

  13. Anonymous

    I was diagnosed with pls in 2009, My legs are stiff ,weak also feels very heavy to pick up for the next step, but still i try to walk for my daily needs in the house with the help of a rollator walker, my speech is very poor, hard to understands, but my loving husbands great efforts he understnds me. My speech therapist recomended to me for an “application” that you can buy through google called “Assistive Chat” which is good if you have problem with your speech. and we got it. I am on baclofen pump since 8/11, it is helping me in my over all quality of life. Most important is every bodys prayers. God Bless those who are suffering like me with PLS.

    • God bless you “Anonymous”- I understand very well the feeling of having heavy legs. The spasticity we experience is described as “involuntary tension”- so there is a tensio when moving that feels like your muscles are opossing your movements. Almost like walking through water. Thanks for the recommendation of Assistive Chat. I am sure that could benefit many people!

  14. Gail

    Thanks I’ll try it. Also have back spasms.

  15. Anonymous

    Does any have a bipap ? I got one 6months ago I have a little more energy….

  16. James Eatmon

    Hi my name is James i serve in the US Navy and am currently on active duty awaiting medical retirement due to recently being diagnosed with pls july 2012. I am 30 years old and was treated by Dr Russell at the Lehay Clinic in Boston, MA. My symptoms started in December 2011 with a vertigo related drop attack and temporary paralysis i have seen 4 neurologist during since then, who said all was fine till i went to Dr Russell who did a spinal tap and told me 48 hours later it was pls. Unfortunately mine is progressing very quickly started in legs neck and back, now has spread to arms and face… include eye tremors no blurred vision but very jumpy. Im nervous it might actually be als but was too early to make that call, i am about to be transferred back to my hometown of the Detroit metro area in michigan. My treatment will continue at the ALS Center at the University of Michigan under the care of Dr Feldman. My prayers are with everyone else who has this rare diagnosis, and everyones loved ones that are equally affected. I have a lovely wife and wonderful 9month old daughter who make ever moment of pain more bearable!

    Im becoming very active in research for pls and other motor neuron diseases i will try to help others get questions answered so feel free to email or stay in touch.

    • MY NAME IS MARTIN I LIVE THE UK I HAVE AI AM GOING TO SEE ANOTHER NEURO ! HAVE UPPER MOTOR NEURONE SIGNS HYPERREAFLEXIOR ABINSKYS SIGN SPASTICITY AND NEUROPATHIC PAIN AND MOOR I LIVE IN HEREFORD UK AND ALSO HAVE BEEN INVOLVED IN THE SECURITY AND PROTECTION WORLD BUT AM NOW SLOW AND WEAK MY E MAILL ADD IS “THECAPRICORN@GMAIL:COM STAY STRONG AND NEVER GIVE UP NEVER GIVE IN LEARN MUTCH ABOUT YOUR ENEMY THEN YOU CAN FIGHT IT BEST REGARDS FROM MARTINB

    • Claire

      James,

      My father was diagnosed with pls about 10 years ago. He passed away in December. He was in the Navy as well; we are working with VA to see if his condition could have possibly been related to his time in the military. I am curious to see if you have heard of any connection between the two.

      You are in my prayers.

    • James, God bless you for your service to our country. I’m sorry to hear of your diagnosis and am hoping it hasn’t proven to be ALS as this is common in the military.

    • Marsha

      Hi James. Just re-reading all the entries. How are you doing? You said you are very active in research for pls and I wonder if you know of anything new?

  17. Gail B.

    Hi James, I’m sorry you have PLS. I too was diagnosed with it three years ago. I am 65. However, I have been misdiagnosed since my 30s. I lived in small towns in Arizona and never went to a specialist until lately. Anyway, I have a Baclofen pump for the muscle spasticity. It has not helped my walking but it sure took care of the pump. Please ask your doctor about Baclofen. I will include you and your family in my prayers James. And God bless you. Please keep in touch.

  18. Gail B.

    James, sorry, I meant to write the pump sure took care of the pain!

  19. David

    My name is David and I was diagnosed formally with PLS a year ago. I have had the symptoms for years and have seen more doctors than I have fingers. In fact after a MRI ten years ago they found a cavernous malformation in my mid section of my brain. Many of the doctors I saw afterwards thought this condition was connected to my PLS conditions – extreme spacsticity . In fact a neuro doctor at one of the hospitals here wrote in a medical report not to worry about the spasticity. I respect my GP but he sure missed the boat in assisting me in my condition. Finally I was able to see a doctor who diagnosed my condition. I walk now with a cane and my coordination is very poor. Meds help but make me drowsy as I still work full time in a pressure packed job environment. I tried botox injction but had little effect . Quite often when I go for a follow up visit wih my doctor at the hospital there are med students who are quite interesed in my condition. My doctor indicates that PLS is quite rare with only 9 patients in the whole city. My approach is to take things day day and try to manage this strange disease that has had a great impact on my life.

    • David, your story sounds very similar to my own, although my brain scans have all been normal. I too use a cane to get around and am continuing to work. I stopped taking baclofen because it made me tired. I agree that taking thing one day at a time is a good strategy!

  20. My brother Aki has PLS. It took years for doctors to finally diagnose him. Like most here, the trouble is mainly at his feet and legs, but progresses to his back because of instability problem. It’s a very sad thing to see him go through being that he is only 40 and has had symptoms for almost 7 years now. In addition to his difficulty walking, he has also had an increased difficulty breathing and an extremely low energy level. He can’t quickly get out of bed now and must stretch just to be able to stand up after sleeping. He hates all the medication that the he has been on in the past. I hate it too.

    It seems as if stretching could and massage could be very beneficial to him and everyone who suffers with it as well. I am his younger brother, Russell. I work as a personal fitness trainer in the Southern California area. I’m about to launch a campaign asking people to contribute what they can for my endeavor. With the money raised, I plan on obtaining a Certified Massage Therapy License so I can become A.R.T. (Active Release Techniques) Certified. A.R.T. is a form of soft tissue manipulation that helps restore proper muscle length and tension. I have had this and several other forms of soft tissue work performed on myself and my clients and I believe this to be one of the very best methods. Although sometimes painful, A.R.T. is truly an effective way of regaining mobility when tight muscles or trigger points prevent the proper movement and function of muscles. Stretching is great but is often not enough.

    I know there aren’t a lot of people diagnosed with PLS and even fewer away of it’s disastrous effects on the individual and family. There’s even less information for those who are suffering it’s effects. I plan to help with that. I will create a web blog and video log with information about my sessions with my brother. Explaining to others with PLS what works, what doesn’t, and offer advice on how they can self treat or receive similar treatment where they live.

    I don’t have an actual product that I can provide to willing donators to my cause. However, for those who live in the greater Los Angeles area, part of my offerings for contributing, I can offer my services to them, their friends and family, or for those who donate but are far away, their donations can pay for treatment of other people who are suffering but cannot afford it.

    If you live in the greater Los Angeles area and would like to be a part of my list of people who my receive massage and myofascial stretch treatment as paid for by other donors, please let me know. I will be happy to put you on the list. If you know of anyone with PLS in the greater Los Angeles area, please let me know. Or, if by chance you would like to help with my cause by donating, please let me know. Time is precious and is the only thing we cannot make more of once it has passed. I know this treatment will only delay the onset of more serious problems with my brother but if I can add a little more joy to a single day of his life, it would be worth it.

    Best wishes to you all. Make each day count.

    Russell Fukuimano
    http://www.itrainwithruss.com
    russellfukuimano32@yahoo.com
    (626) 534-4532

  21. Joan

    I am a 63 yr woman diagnosed with PLS after years of seeking a diagnosis. This article is the best discription I have read. Thank you. Is the author still writing?
    I have extreme pain at times and find it very painful to sit. My knees burn and standing back up is awful. Does anyone have trouble with this and have suggestions for a certain chair or position?
    Thank you,
    Joan

    Sit

    • Hello Joan. I am the author and am still around. I have been neglecting this blog for about a year due to an increasingly busy life. I have found that sitting can be painful- especially if you have injured your tailbone (from a fall or even from just sitting on it a lot). If your pain is related to a tailbone injury, which should be discovered via x-ray, then they do make chairs to help. I’d be interested in hearing more about your experience.

  22. Nancy

    I have not been diagnosed yet but I think I may have PLS. I was checked for Spasitc paraparesis and the test was negative. I have had hyperreflexes for 13 years. My legs jump sometimes and are spastic. I have had problems with balance. Numbness and tingling is intermittent. I startle very easily which I read can be a sign.I have difficulty waling up stairs and sometimes for short distances. My legs feel weak but when the doctor checks my strength, it is normal. I do have trouble with articulation at times. I am very frustrated that a diagnosis has not been made yet. I hope my doctor will make a diagnosis soon.

    • Nancy, I am interetsted to hear if you have had a diagnosis yet. The feeling of weakness in your legs with normal strength is how I often feel. Sounds odd… but that is what it is.

    • Heidi J

      I came back to this site because I saw a top neurologist here in Indianapolis and he is not confident that PLS was the proper diagnosis for me….13 vials of blood later & an upcoming EMG by a Mayo Clinic trained dr (2 I’ve had contradict each other) and maybe I’ll get a different diagnosis. Anyway, one of the main things that made him think it wasn’t PLS is that I have arm & feet numbness. He said those weren’t symptoms of PLS and that there’s many things that have symptoms similar. For those of you with PLS, do any of you have numbness/tingling? I sleep with my arm under my pillow & always wake up with numb (feels like when your foot falls asleep) arm/hand. Just prompting myself up on my arm as I laid across the bed to read this blog made my arm numb. Thanks for any input!

      • Hello Heidi, while the tingling and numbness is not an immediate symptom of PLS it alone should not be used to rule out PLS. PLS is characterized by upper motor neuron (UMN) damage and there are diagnostics they can perform to determine if you have UMN damage. Numbness and tingling can be a sign of many different things. MS for example is often accompanied with peripheral nervous system symptoms exactly as you described. MS can be ruled out with an MRI (the presence of legions are required for a diagnosis of MS and are noticeably absent in PLS). I would encourage you to discuss these other possibilities with your neurologist. The presence of peripheral nervous system impairment should not rule out PLS even though it is not a symptom of PLS.

        • Heidi J

          Thanks for your reply. Guess I didn’t word that properly….he kept my diagnosis as PLS but said there’s several other (curable) things it could be too. My husband & I were both very impressed with him, & the resident working under him, and he rattled info off like saying ABCs. I’ve had 4 MRIs, spinal tap, bone marrow biopsy (blood work identified protein in my blood-no cancer!), full body X-rays, 2 EMGs scheduled for a 3rd, blood work of 10+ vials twice, seen 3 neurologists, a spine dr, cancer dr, & been to physical therapy. He increased my Baclofen (10mg) to 3x daily,I’ve only been on abut a month & was at 2x, and I take 1 300mg Gabapentin at night (hate it). I was prescribed Valium but couldn’t work while using it but thinking about trying again. I had joked I had to sell them to offset medical expenses. 😉

          • Hello Heidi, Thank God for a good neurologist! I’m so sorry that you have to go through all those tests . . . I remember the diagnosis process so clearly and don’t miss it one bit! It sounds like I you are on the same prescription plan I was- Baclofen, Gabapentin, & Valium. I have completely stopped taking my meds -because I still work and have a (large) family. All of these meds get in the way of daily life! I finally came to the realization that spasticity is not fatal and as long as I can tolerate it I will. However, I think this is a personal choice and I think everyone needs to weigh their symptoms against whatever else they have going on in life. For me it was a no-brainer. My family needs me to be alert for them and I need to work.

            It sounds as if your neuro is a reasonable man. Hopefully you can get to the root cause of your tingling/numbness. I have it in my arm from using the cane a lot and I do not care much for the sensation.

            Aaron

  23. I am still waiting for a diagnosis but primary lateral sclerosis. I am only 32 so it feels some days like my world has ended.

    • I know the feeling fedupbeingill. The diagnosis process is one of the worst parts of the whole thing. Have you found out more since then?

      • Nope not really……. Still waiting. My employer has retired me due to my health but refusing me a pension because I have no proper diagnosis. Its hard to get help as I am ill and struggling but little help is there without a diagnosis!

        • fedupbeingill, how are you these days? Any news on a diagnosis?

  24. Fantastic post but I was wondering if you could write a litte more on this topic?
    I’d be very grateful if you could elaborate a little bit further. Kudos!

    • Thank you Albertha. I will probably write more soon on this very topic. I’m further along in my journey now and have learned more through experience.

  25. Gail B.

    I know God loves us and I feel he has allowed me to have PLS to be an inspiration to others. In fact, I have had people tell me things like “you never complain”, etc. I have suffered with PLS for almost 30 years and it has not been easy. Stress really makes me go downhill and I have had alot of stress in my life. Anyway, please try to make some good of this crippling disease. I know it’s hard but you can do it. If you are a believer, others are watching.

    • Gail thank you for your encouragement. My faith plays a very large role in how I manage to persevere. It sounds as if you and I are very much alike in this respect.

      • Marsha

        Yes I think we are!

        • How are you doing these day?

    • Heidi J

      I was recently diagnosed w/ PLS and am now on medical leave. It’s encouraging to me that you’ve been able to control this for 30 years. In just the few days that Ive been on medical leave, Ive noticed how not having the stress of work (& fear of falling) has affected my pain….or lack thereof. I too trust that God will see me through this.

  26. Anonymous

    I don’t find the comment “others are watching” inspiring.

  27. Gail B.

    Anonymous: They are watching to see how you handle having a crippling disease. It is not a curse.
    Is anybody out there using an auto-ambulator? I use one 2-3X a week and do well while on it but soon as I get back home I am stiff again. Thinking maybe a excercycle might limber me up. Any comments? Thanks.

    • Gail, I’m not familiar with an Auto-ambulator but will look into it. I use a stationary bike sometimes. . . and have six children 12 and under. 🙂

  28. Goodness! I took about a 13 month break from this blog, came back just these past few days and realized that there have been a few comments posted since I was last here. I have enjoyed hearing all of your stories and hope to be able to get to know more as we traverse this journey together.

  29. Anonymous

    An autoambulator is a walking machine to help you re-learn the correct way to walk (i.e. heel, toe). They are way too expensive to have in your home, I don’t think gyms have them, I have to go to Physical Therapy at a Rehab Hospital to use one and pay each month. For me it helps, but now they tell me that the effects do not last. 🙁

    • Thank you. I was not familiar with them. I looked it uo online and it looks impressive!

  30. AWC

    I am a caregiver to my husband who has PLS. He was diagnosed in 2010 & he has progressed pretty rapidly. I am heartbroken for many reasons but am uplifted because of God’s blessings in so many ways. My husband is on a great deal of medicine. Just wondering if there is any thing new.

    • Hello AWC, sorry for the slow response. How is your husband doing? Are you hanging in there as a caretaker? That is a difficult job.

  31. Anonymous

    Hey there, You’ve done a great job. I will certainly digg it and personally suggest to my friends. I am sure they will be benefited from this website.

  32. Anonymous

    I just like the helpful info you provide to your articles.
    I will bookmark your blog and take a look at again right here regularly.
    I’m reasonably sure I’ll be informed a lot of new stuff proper here!
    Good luck for the following!

    • Marsha

      I have most all the symptoms of MS so had a brain scan and nothing has changed since my last scan 3 years ago. Do any of you have MS symptoms but were diagnosed with PLS? Thanks.

      • Marsha, MS and PLS share many symptoms since MS can effect the Central Nervous System (CNS) including the motor neurons which play a significant role in PLS. Both MS and PLS have spasticity in common as well as the typical upper motor neuron (UMN) symptoms (e.g. positive Babinski sign). MS should be ruled out before the neurologist jumps to a PLS conclusion. MS can be ruled out through an MRI and the lack of sclerosis of the brain or spine.

        • Sami Jo Magoffin

          The brain MRI cannot rule in MS. Only a positive brain MRI and oligoclonal bands in a lumbar puncture will verify. I had a positive demyelination brain MRI, but it was a red herring. It was damage from an old singles encephalitis (2006) that happened simultaneously with the apparent start of my PLS symptoms. Since I only just began this probable diagnosis (December-January 2015-2016), I am being referred to the NMD center at UK Medical Center in Kansas City. Then these tests and many others will confirm or alter my diagnosis. MS was ruled out as were many other diseases.

          • Sami Jo Magoffin

            Ignore the word singles. I meant shingles.

          • Sami that’s a good point. There are other things that can cause demylenation so an MRI alone is not sufficient. I hope you get to feeling better!

  33. Anonymous

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  34. Janet Benoit

    Admiring the hard work you put into your blog and detailed information you offer.

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    Wonderful read! I’ve bookmarked your site and I’m adding your RSS feeds to my Google account.

  35. damian

    WOW great reading hi my name damian my story in brief. where do i start im 46 with alovly wife and three boys oldest 25 22 18 about 2 years ago i started to notice my leg cramps at nite real bad so doctor tells me drink some quinnene and plenty of water but didnt go away then goggle it im type 2 diebetic and have high colestral and take statins my doctor said keep taking them . found it harder to walk proper spacticly real weird so off to profesor nuero in canterbury kent .blood tests lots of. then a emg and nothing then im off for a lumber hurt a bit a needle in my back to get fluid and test and i did have a mri scan b4 the lumber and still no news from nuero he sent me for another emg this time in the kings collage hospial in london another professor dr mills nice man but he wasnt conclusive then insted of going on our holiday we just wanted some news why i couldnt run any more so we had apointment with dr cathy ellies in kings but was 5 months away but if i payed 750 pounds i could see her within two weeks funny that she said its possible i could have pls but i wanted answers but she didnt have. well spent 750 pounds she sent me for another emg same place in kings london dr mills again lovely man but again still 50-50 so thats it so far we dont know another apointment with the neuro in july this year .im still working full time but legs def not getting better sort off level out i still walk funny lads at work take the mick my balence is not good at all do have the twitches and cramps in my calfs sorry about my spelling and if im boring yous .my dog is very demarding for walks at weekend only manage couple of miles these days walking down hills find it very hard up not so bad so wats my point dont no really first time really ever wrote so much. maybe to hear some feed back who have same symtons .could go on and on thanks for listening well reading this damian

    • How are things these days Damian?

  36. damian

    and thanks to Teleia Philia great site

  37. Dave

    Hi, just to say I feel your pain every day,I to have been diagnosed with pls, on set about 2008, I am 56 year old.

    • damian

      WISH YOU GOOD LUCK FOR THE FUTURE DAVE

  38. Joan

    Aaron,
    I am the 63 year old woman who wrote on this site on Sept 12, 2012. I hadn’t checked back for quite some time as I hadn’t seen any activity from you. I am glad to see you are participating once more. It must take a lot of effort and time so it is wise to pace yourself.
    Our interaction with the Internet is so easily enslaving.
    I also live in Oregon, outside of Sherwood. I was especially attracted to your site because of your faith in Christ and interest in philosophy and literature. Your description of PLS is spot on.
    My experience involves severe, chronic pain. The problem with sitting is due to spasticity and sharp nerve pain. I can now sit longer but then have difficulty standing back up.
    I, too, use a cane but am trying to use a wheelchair more to conserve energy. However, sitting can be uncomfortable.
    I have been given a good deal of grace with this disease, especially as it clarifies what is important in this life. There are also times when I scream , wondering why God doesn’t take away the pain. I also know that God’s ways are not mine, and His are true.
    I take a great deal of medicine and am not sure what helps or how much. I’ve been told that meds can at best alleviate only 30% of the pain.
    There are times when I observe myself and think this can’t really be happening. Then, I think of all the past and present suffering in this world, and ask why should I be excused?
    This summer, I will be selling my home as I can nolonger take care of it. I have two acres on which I have had countless hours of gardening and joy. Only God knows what is next.
    I hope you continue to be able to be there for your family. Maybe, sometime we can discuss local resources and the decline of holiness in Christianity.
    Joan

    • Dave

      I wonder if someone with PLS has arm trouble, my right arm is starting to get painful
      All the way into my neck,just wondering if that’s normal for PLS

      • Hello Dave, I also have arm pain but my understanding is that it is not a symptom of PLS, but rather, has a secondary cause. I often have cramping (presumably from the spasms caused by spasticity) but these are almost always in my legs rather than arms. Perhaps others have similar experiences? What kind of pain is it that you have?

      • Gerish

        I’ve been absent for a while, but now I reemmber why I used to love this website. Thanks , I will try and check back more often. How frequently you update?

    • Joan thank you for your comments and encouragement! There certainly is a lot to discuss in both of these areas. I would enjoy discussing them! Glad to know someone locally who has the same experiences.

    • Joan thank you for the reply and I am sorry for taking so long to get back to you! I pray for you often and hope all is going well. I would love to discuss local resources with you and also the decline in holiness. I am greatly concerned about that as well. Do you attend church in Sherwood?

  39. Patricia L. Weed

    I have loss of function in both hands, muscle weakness and the feeling of my mus les being torn from the bone. I lose balance easily and my voice goes hoarse when talking for a few minutes

    • Dave

      Thanks for the info, Teleia , I use my arms now more than ever , my trunk muscles are getting worse,so to transfer, get up out of bed , even to stand for short periods, I use my arms. The reason that I ask is that it is only my right arm, mostly in the shoulder.i should have though about it a little more, I will keep up to date on the web site a little closer,the information is invaluable, thanks to you all. Dave

      • Eric

        Hello Dave, and all – With leg weakness I depend on my upper body quite a bit – even with the sharp pain and limited flexibility in my left shoulder – and general slowness in my left arm. I’ve started using a hospital bed that is fine once I’m in it – but difficult to get in and out of because of the problem moving my legs and because there is nothing to grab hold of. I tried a trapeze on the head board, but found that of limited use. I’m considering a free-standing pull-up bar with rubber feet for about $200 that is 80-inches long and height-adjustable from 5 to 7 feet. I want to start by placing it diagonally from the lower right to upper left of the bed so that I can reach up with my right hand and hopefully leverage/pivot my legs to the left and onto the floor as I pull myself up. How have others been dealing with getting in and out of bed?

    • Patricia, I’m sorry to hear of your suffering. It sounds like you are describing PLS. you are in my prayers.

  40. Archie h. King

    My symptoms began two years ago: clumsy, tripping, falling, weakness in left hand. I have been diagnosed with ALS. I question my diagnosis. I am able to walk with the assistance of a cane. My upper thighs are very weak and burn all the time. Only my left hand has experienced atrophy. I have no Balmar effects. Could I have PLS?

    • Dave

      Archie,it sounds like you need a second opinion,have they done the MRI , blood work, EMG ,to make a diagnosis they have to eliminate a series of other things,(as far as I know)they have tested me for all kinds of things, I am not a typical case for ALS or PLS, my Niro is calling what I have as PLS ,really only time will tell for me.i can only pray that you have neither. One day at a time! Dave

    • Hello Archie, Have you found out any more on your diagnosis? It could be PLS. What made them diagnose as ALS? The main difference is that ALS affects the lower motor neurons so if it is ALS you will see diminished functionality in your respiratory as well as fasciculations. These are signs of ALS as opposed to PLS, although I have benign fasciculations so it isn’t fail proof.

  41. damian

    my symptoms sound so much like yours archie mine has been about two years but have not been diagnos and I do wonder the same thing .how was u diagnos with als hope yours is the pls good luck my friend .damian

  42. d

    Sorry Teleia to hear of your issues. And everyone else! I too have recently been diagnosed this summer with PLS after several years of looking and hoping someone would make a genuine effort to find a reason for the constant pain, burning, numbness and cramping I finally got my answer and now I am in a serious state of denial and feel like the depression is worsening. I know that it is not fatal but accepting the fact I can not be the old me has proven very difficult. How do you and many others combat these feelings. How do I explain to my family what I feel and why. So many things at once I feel a bit lost and know that I am not alone. Sorry for the rant just wanted to vent a bit and see how it feels…..

    d

    • d, I am also sorry to hear about your diagnosis. I am rather young for PLS (just turned 39) and have a large family (a wife and seven children) so for me, I kicked right into survival mode. In a sense, this was a good thing for me because I couldn’t allow myself to go into a depression or denial- at least not much of one. I had force myself to accept the reality of my diagnosis and move on in order to provide for my family. The first few years were the most difficult, wondering if it would turn into ALS, thinking about what that would mean for my family, what I would need to do to get my house in order if I ended up facing certain death. . . all of those thoughts.

      I was also comforted by my religious faith. Now, I know this is where many people tune out, but hang in here for just a moment if you are tempted. I’m not going to try to “convert” anyone 🙂

      On one hand the Christian message (the gospel) is ludicrous- so ludicrous in fact that it seems insane to allow oneself to believe it. However, I have an enduring belief and confidence that it is true and that confidence does not come from my natural desires. My natural desire is to try to save myself and work out my own plan apart from God. However, this has been supplanted (if I can use that word) by an even greater confidence that God will accomplish what he has said he will.

      So all that to say that if the Christian message is true (and I believe it is) then I came to a place in my life where I had to ask myself why I expect to have a life free from suffering when God himself did not demand that kind of existence for himself. If I truly believed that the creator of the universe chose to condescend down to his creation and suffer with his creation as a act of solidarity, then what right did I have to demand from him a life free of suffering? I don’t have an answer for the deeper questions about suffering (how can an all powerful and good God allow suffering? Why doesn’t he choose to end suffering if he is both good and able to stop it?), that is to say, I don’t have a robust theodicy. However, I took solace in believing that this God who has not stopped suffering has stepped into our world and suffered along with us rather than sitting on his “throne” from afar and observing our grief.

      So that is my story. I realize that it is different from others and that not everyone shares my convictions. But since you asked how others combat these feelings I thought I should be honest and share what comforts me.

      I’d love to hear how you and others cope with these feelings. Especially pain, depression, loneliness, anger, etc… the whole range of emotions.

  43. Marsha

    I know what you mean about denial. For years I did not take care of myself because I didn’t want to face it. Taking care means stretching, knowing your limitations, etc. Anyway, about the depression you must get on a good anti-depressant. It might take a couple of tries before you find the right one for you. Also, I pray a lot and give thanks for the positive things in my life. It’s amazing what all is positive that we take for granite. As far as family, my family still is in denial and ignores what is right in front of them. That’s a hard one. You could copy something from the computer about PLS and ask them to read it. For me, it has been a very hard problem as far as family goes. You are not alone. Please please remember that. Write as often as you like.

  44. d

    Marsha,
    Thanks for your reply. You are correct in a lot of ways. Finding your new limits is very hard. Depression is a tough one have fought it for 11 years now seems to rollercoaster and tends to follow the physical symptoms now. Family is aware but not sure how well they understand and want to see the true changes. Loss of muscle tone and lack of desire to do the things we used to tends to build a lot of tension.
    Medications have been a real problem as I tend to have really odd reactions to a number of meds.Have been lucky to discover (Dantrolene), which has at least eliminated cramps and now just fight horrible fatigue and exhaustion.
    Try to focus on positive side I always know that there are many who are worse off and I would rather fight with this than have the kids worry with something like it!

    Again thanks helps to talk to someone who realizes the aggravation
    d

  45. Marsha

    It is good to hear from you. I am with you all the way…and my fatigue is really escalating. So is my reaction to the heat this summer. I just don’t have any answers. Those of us out there on this blog are here for you.

  46. HJ

    It’s always nice (for lack of a better word) to read posts in this blog as it seems real. I’m in another PLS group and many still work & carry on very well, this made me feel more like a failure. My family has been AWESOME with my illness, its the guilt of all they’ve had to sacrifice & now do because I can’t. My husband & doctor are really trying to get me to get out of my own way & accept that I am lucky to have a great support system. We had to sell our 2story home because of the stairs, my husband & kidshad to pick up what i used to do, even though I worked FT, I volunteered a lot at school, church & work-not anymore. Having PLS gives you a whole new look at life…I mean do you know how many places aren’t handicap assessable!? Even the neuroscience complex bathrooms aren’t. People are rude & inconsiderate, yes like I chose to walk this slow or ride the scooter for fun. :/ Im half way to 42, was diagnosed finally in 3/13 and been on medical leave since 4/13. I walk with a cane or walker & although I’ve learned somewhat how to fall, I still fall or almost fall often (trying to be independent usually is why). Sorry guys for this input but I seem to get depressed around “that time of month” and have worse balance issues then. For the most part my pain is controlled by my meds but I have NO MOTIVATION.

    • HJ, welcome and thank you for your story. In many ways, we are in a similar place- both being younger and still have families. I will pray for you and your pain, depression, coping, feelings of guilt, etc.

      My family has also been absolutely wonderful. It sounds like you have progressed further than I have. I am still working myself and haven’t yet sold our 2-story house, but I know the day is coming when I will need to trust in God to provide in ways I never have had to do in the past.

      A good spouse is a wonderful blessing! I have read so many stories of marriages ruined over this disease so if yours if strong (it sounds like it is) then consider it a blessing. My wife is absolutely wonderful. When all of this started she let me know that she was in it with me and she has never looked back. I don’t know what I would do without her support.

  47. d

    HJ, Marsha,

    Nail on the head I guess as people say. Seems that with this illness the thing that really bothers me is that it is not something I or others can “see”. Unlike other disabilities and I mean that with no disrespect but the rareness of what we have that seems to be my big hurdle. Even with trying to file for Social security disability the somewhat uncaring incompetent doctors and therapist seem to discount you from the word go. Of course they do not understand that “rare” is the reason I guess. HJ / Marsha I too have noticed this year a spike in heat sensitivity more so than ever always flushed face and guys like me sweat enough in the heat.
    As a guy I hate to succumb to limitations but sooner or later that will be a fact to swallow.
    I recently tried a script for Ritalin as a test to increase energy…..whew what a mess all that mind racing and no where to go.
    Got sick this morning and ended up aspirating bad , which in turn has caused a flare in asthma and COPD symptoms. I feel like a hypochondriac but what is is. Hope you both are having a great day.

    thanks
    d

    • d, I am with you on the heat issue here. It bothers me to no end! I live in a relatively mild climate but we do have a handful of days which get into the 90’s. For me, those are my dark days.

  48. HJ

    Im always cold so haven’t noticed a change in heat sensitivity, Guess I should be grateful my husband keeps the house & vehicle like an ice box then! Lol I’m in Indiana and what a crazy summer we had…it’s in the 90s today! (I’m inside in a sweatshirt though!)

  49. d

    I have decided to set the thermostat on -4F and hopefully stay cool in the house? And if someone sees me outside sweating I will just start pretending that I just finished working and need to go in and cool off.
    Has anyone tried therapy in a pool? I have tried in the past and it always tends to make the cramps worse?? Not sure if water pressure or weightless feeling causes it.

    • d, is that where you really keep it or was that a joke??!! That is COLD!

  50. HJ

    I played with kids in outside pool & could barely walk from exhausted legs when I got out but didn’t notice any other side effects. It was like the scene in The Little Mermaid when Ariel first got legs! 😉

    • HJ, I know that feeling! Wobbly legs and all!

  51. Marsha

    I have walked and exercised in a pool and it’s amazing to feel so light but it did exhaust me. I was in a wreck and I am so traumatized. Neither my grandson or I were hurt but it sure has affected my legs. I feel like my legs are made of cement. Stress really affects us.

  52. Marsha

    I was in a wreck and no one was hurt but it was pretty bad. Anyway, point is how much stress affects our PLS. My legs feel like they are locked in cement.

    • Marsha that is such a great description. . . “locked in cement”.

  53. Marsha

    Do any of you still drive? Do you think PLS is affecting your leg movement as far as driving?

  54. d

    I no longer drive. 3 wrecks and a totaled SUV and I am done. Not had my license pulled but family refuses to ride with or let me drive alone..

  55. Marsha

    What about hand controls to drive?

  56. HJ

    We are actually trying to sell my SUV right now. It’s too high for me to get into safely and I feel like my legs are too weak to really slam on the brakes should I need to. If I drive its usually within 4 miles of our house. I’ve been going stir crazy as I was always on the go before PLS so against my husbands wishes I’ve been going some places alone lately now that I have a walker but doors are really hard to open and colder weather will be here all too soon so I’m sure this will soon come to an end.

  57. Anonymous

    Yes the cabin fever has already set in here. I have tried to do yard work and usually end up in a pool of sweat and hoping to make it inside.
    Have not thought of hand controls for car but thumbs tend to be weak and grip has went away. Similar to HJ I sneak short 5-6 mile trips in without telling anyone but desire vs. common sense is not ruling decisions!!

  58. d

    Cabin fever has set in already. I sneak drives in 5-6 miles no more. Seems common sense and decision making has flown out the door. Hand controls for me would not work thumbs are weak and grip is gone. I do find using a laser pointer and making the feral cat that has come to the house chase is quite entertaining.

  59. Marsha

    You two be very careful! I know what you mean in that I am worried if I can’t drive I lose so much independence and I will be stuck here, dependent on others for rides which they will tire of. Checked into a cab and can’t believe how expensive they are. Have applied for a handicapped van for rides but was told it will take up to 6 weeks for approval. Like I said before, I have no answers.

    • Yes, be careful! Sometimes a little bit of independence is good for the soul though. My wonderful wife is legally blind, has been all 37 years of her life, and she sometimes starts to get restless. She hasn’t asked in a while, but sometimes she just needs to get out alone, which is difficult when you can’t drive. When she gets this urge I have taken her to the mall and dropped her off. I think that is good for her and for those who can’t drive. The transportation is the most difficult part- but if you can arrange for it I think it is good to get away from the norm and just get out.

      She also gets out with her friends from time to time. These are important things to do if you are able. Of course, we all know that . . . it’s the darn transportation issue!

  60. d

    Yes others want to help but they do get tired of lending a hand. I do not blame them really. It becomes a burden for others as it is a burden on you and your own family, the guilt is almost too much at times. always wanting to be alone but can not wait for family to get home …. Guess this is how things are going to be like it or not.
    Think I may get a dog to have company??

  61. Marsha

    I have a small dog and she sure is company. Need to find someone to walk her though. Anyone out there have a power scooter? I am looking into them.

    • Marsha, check with your local chapter of the ALSo association. They typically have scooters for us to use at no cost. What state are you in?

      • Marsha

        Arizona

        • I don’t know the Arizona ALSA employees but I may have some contacts who can put you in touch with them to see if your local chapter will give you free access to a scooter. Are you on Facebook at all? If not let me know the easiest way to get a hold of you if you are interested.

  62. HEIDI (HJ)

    @Anonymous-yes my “independence trips” are definitely not common sense trips!

    My dr referred me to the MS clinic just to meet with a DME (durable medical equipment) rep who can hopefully help me get approved for a scooter. The one that referred me is at the ALS Clinic (im in Indiana) so guess they dont have a program for scooters.

    As for dogs, we have a Yorkie and a Bull Mastiff puppy, the Yorkie does pretty good to move for me & my walker but the puppy is always up under my feet and I’m afraid he’s going to trip me! My husband HAD to get him so that the kids and I had protection if he was gone, I’m sure I’ll appreciate this one day but right now….oh my!

    @Marsha we came to AZ last summer as we thought about moving there since the cold affects me so badly, but decided that we needed to be near family for our children. I loved it though! 🙂

    • Heidi I just LOVE Bull Mastiff’s! Too big for our family though but would work very well for protection. They sure are sweet dogs though. With so many little children running around our home we enjoy our dachshund rather than the BIG dogs

  63. Anonymous

    Talking about the progression period. How long do you all think it took before realizing that you finally needed assistance for moving about? Even after finding out what I had I still notice that my symptoms progress in a wave type fashion. Short bursts of “buzzing and cramps” followed by months of extreme pain.
    d

    • D, It didn’t take me long at all. It was either that or risk falling in front of everyone.

  64. HEIDI (HJ)

    D-
    I had sporadic incidents of clutzy, knee popping, & tingling feet for about a year before I got the ‘stiff’ leg and it was 3 months after that and I had a cane and it took me 9 months before I sucked it up and got a walker. I didn’t have pain until almost a year & a half into this and I think my increased stress at work is why it started…maybe it’s a coincidence but I saw a HUGE change one I went on medical leave and that stress was gone. Like Teleia said, its use it or fall. If I had a dollar for every time my husband reminds me that people that die from PLS is because of falls I’d buy us all scooters! 😉

  65. d

    I battled with the problems in a very physically/mentally demanding job and just figured the limp and the pain was part of the job. When I left last summer I began to realize that even with rest it would not go away. I have conceded now to the idea of handrails on steps and limited activities when “home alone”. I worry quietly about the falls and stumbling if alone because even with a cell phone it would do no good. Maybe one day one of us could hit the lottery and we could buy the scooters?? Teleia is right Heidi suck it up and use it.

    d

    • d

      That is implied for me to use the cane/walker. Sounded bad when I say the post sorry..

  66. HEIDI (HJ)

    🙂 it took me a bit to use the cane & walker & now I’m so mad that I Was stubborn and didn’t go to walker sooner, I walk so much better and i would never go out alone with just my cane. Get a walker & just use it in your house at first then you (may) see the difference it makes. About the only thing I absolutely won’t do when home alone is shower but then again there’s not much I can do. Around the house anyway.

    • Has anyone here tried SideStix? to get around? I’m hoping to save up enough money to buy a pair. They look like they can relieve a lot of the ambulatory issues related to canes and walkers. http://www.sidestix.com/

  67. d

    I have a stick of ironwood and use it some when around the outside but never admit to needing it. Only problem is forearms and fingers are so tired and fatigued it is hard to hold it without them wanting to draw up. I, like many others seem to have a slower pace and like to stop and smell the roses too much for those around me.
    Yes learned the shower part the hard way, turned one day and feet did not follow and fell cracking the tub floor…pure genius.
    What were the very first symptoms you all noticed? And I noticed Teleia has a lot of philosophy links and references does the study help you deal with issues or is this a personal interest that you had beforehand (not prying)? I have tried to spend time trying to “focus” on interests but the mind racing is unbearable at times. Does anyone have the thought processing problems? I am trying to get a quick handle on things as this is partly a personality trait as you can guess from this entry.
    I do want to add that I thank you all for responses as it helps GREATLY and is nice in a positive way if there is one to understand that others know the feelings and struggles…….
    thank you

    Also does anyone have direct links to literature about the condition? I have a book given to me from Duke Neuroscience that they use as training on MND… but want more
    d

    • Hello D,

      I studied philosophy in college and it has always been an interest of mine. It hasn’t helped me focus much at all! What does help for me is prayer and meditation on the scriptures- but I realize that not everyone shares my faith.

      This page has become very busy, so I am looking into perhaps creating a discussion forum type page where the discussion can be categorized into different topics. I am trying to go back to catch up on the conversation and am finding that it isn’t always easy in this format! I’m not sure if a discussion forum is possible on this current format. I may have to purchase the web site instead of using the free version of wordpress but it sounds like that might be useful. I’m starting to see more and more that we need a place to help one another- even if just to know that someone else understands.

      BTW, please call me Aaron. I’ll try to figure out how to change the name on my login. I’m sure it is in the user profile somewhere.

      Aaron

      • Eric

        Hello Aaron, That’s a wonderful idea. These conversations are refreshing and serious.
        -Eric

  68. HEIDI (HJ)

    I don’t think I’d feel safe with side stix, if I lost my balance I feel those would just go down with me. :/

    • Anonymous

      Sorry for coming into the blog a little late, but here goes, re hand controls, I would be lost with out them, i have lost thumb dexterity , and some finger movement , but it is not a problem, the hand controls work with the left hand, not just thumb or fingers,they work great for me. Mobility aids are also something that should be used rather than falling, I did that too because,I like a typical male I was not going to be beaten by this ( pls) I use a power chair in the house and have two scooters, one is a yard scooter and the other is a small pride gogo, for the car(SUV) that comes apart, I can still lift all the little parts and put it together(takes 2 min to assemble it). As for water therapy, I was a recreational diver, so I love the water, but it’s very hard to get my legs to work after a swim,( I can’t walk any more, not for a year or so)they get very stiff and the muscles go to vibrate,so I load up on my baclofen and about an hour later all is some what normal, needless to say that I don’t swim much anymore. My point is don’t give up, try it all, my hand controls were 250 on the Internet.There are good used Scooters out there, here in Canada a lot of places have rental stuff, call them see what they offer, Red Cross can put you in touch with people that can help. This is why this blog is invaluable, have a question, ask, someone will have input,hope this helps some, my PLS hit me hard,but it is what it is, I push on, life is worth living, Air Canada is great, I fly from one coast to the other once a year, no problems,I have a boat that I use, I quad with friends, I know it sucks, don’t let it beat you! Thanks for listening I just needed to say

  69. Anonymous

    I have been reading a lot of material regarding the nervous system and relation to pressure point uses. The more I finally think I understand it seems to have reason to believe acupuncture may have some value in therapy. Has anyone tried this and if so was it helpful? Once went to massage therapist for dermal and deep tissue massage and left ready to hit someone with a rock. They obviously did not understand the problem as they claimed!

  70. HEIDI (HJ)

    I dont know if the anonymous posts are same person…would those of you posting under this mind doing initials so we can tell the different people? 🙂

    I think I’m jealous of those of you in Canada, you may have a better healthcare/support system than us (I will refrain from US political comments here lol) I have seen smaller scooters for about $600, but with a younger child I want a sturdier one for outdoor use (and bike races!), I am going to take the suggestions & see what help I can find here in Indiana.

    Did you feel like it helped a day or two later though? My mother is a (swedish) massage therapist but lives almost 3 hrs from us. I get a treatment every time we go home! Her treatments are totally different that these mass massage places. My mother has done massage for almost 30 years, she’s very health conscious & knows a lot. Her clients call her (her office is at house so uses same #) with their health Qs early in a.m., late at night, weekends, holidays, they don’t care and of course since her daughter has PLS she has done her share of research. I do feel worse some of the times, but I knew to expect that. We’re actually moving back ‘home’ when this school year is over so that we’re close enough that she can treat me regularly. I don’t always see a difference but I do think with consistency it will make a difference…at least that’s what we’re all hoping! 🙂 She also suggested some type of treatment at chiropractor but she’s at church still so I’ll post that once she responds. Depending on cost, I’m going to try it & will definitely keep the group updated! Obviously by reading posts, we all seem to be affected differently.

  71. d

    Sorry,
    I did not enter my email and it shows up as anonymous.
    Yes Canada as well as UK seems to have a lot up front knowledge on what is going on in PLS.
    Like Aaron said having a page to separate symptoms for those of us who suffer would be great. But do you feel like eventually however things started it finally seems to just be the fatigue and weakness?

    d

  72. HEIDI (HJ)

    Yes those are most relevant and bad balance. My meds help pain & the bladder urgency.

  73. d

    What did you find to be the best pain reliever for you?
    d

  74. HEIDI (HJ)

    Baclofen 1x 3 and Gabapentin 1 after lunch & 2 evening, as mornings were so rough.

    • Dave

      I posted the other day from Canada, sorry but my iPhone went to comments, I did not see were to put my name! Found it now lol

  75. Gail

    Hi Aaron. some time ago you asked how to get ahold of me about ALS support for a scooter. My email is on this form. Thanks.
    BTW: I just ordered a helper to get on socks because it is getting harder to pull my socks on in the morning. Think I will use a picker upper to get them off. So many things to figure out! Does anyone have getting into bed figured out?

  76. Monica

    Excellent post. I am constantly checking this blog and I am impressed! Extremely helpful info particularly the last part. I was looking for this particular information for a long time. Thank you and good luck.

  77. Chris Rudy

    As a new reader here I was sorry to read about this. I couldn’t tell from your writing. You don’t seem bitter at all.

    • ajcerda.com

      Hello Chris and welcome. I have gone through a lot of “stages” in thoughts on suffering but bitterness wasn’t one of them. If anything I would say that my earlier posts in suffering were too much about me and not enough about God and His glory.

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  79. Amber Bellard

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  80. Maryland Russell

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  81. Sami Jo Magoffin

    I just got the call yesterday for an appointment at the Neurology Department at the Landon Center for Aging at KU, Kansas City. So…March 30th, I will enter Round Two to confirm PLS or find another problem. However, it is UMN with hyperreflexia and spasticity. I have no idea how this will go. I have had symptoms since 2006, but even as a PT I either ignored them, tried to overcome some and never saw a picture until about 28 months ago when things started more quickly interfering with my career. I could use your prayers for a good neuro. Does anyone have experience at KU? Does anyone know Dr. Omar Jawdat, Neurologist?

    • I will be praying for you Sami.

  82. Sami Jo Magoffin

    Thanks for your prayers, AJ! “God is good and all the time” as Don Moen sings.

    • Brenda

      Review! I am 58 years old with 4 kids. I was diagnosed of ALS disease (Lou Gehrig’s disease) in 2013 and I have tried all I can to get cured but all to no avail, my life was gradually coming to an end, until i saw some reviews in a health forum about a herbal doctor from Rome(Italy) who prepares herbal cure to cure Herpes virus and all kind of diseases including ALS, lyme, Diabetes, Kidney, Leukaemia, Asthma, Cancer, Gonorrhoea, Arthritis, Alzheimer’s disease etc, at first i doubted if it was real but decided to give it a try, when i contacted this herbal doctor via his email;(dreitanhealingcentre212gmail.com), he prepared an ALS herbal portion and sent it to me via DHL courier service, when i received the herbal portion, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was cured of this deadly disease within 22-24 days and my doctor confirmed it, I could not walk or talk understandably before but after i took the herbal cure as he instructed i regained strength in my bones and i could talk properly unlike before, I am now free from the deadly disease, all thanks to dr eitan. Contact this great herbal doctor via his email;dreitanhealingcentre212@gmail.com “He’s a man of hi words”

  83. Sami Magoffin

    Hello! I went to see Dr. Jawdat in Neurology at Kansas University. After his EMG/NCV and somewhat detailed eval, he determined that I do not have ALS or PLS, but I have Cramp-Fasciculation Syndrome. It is not life-threatening but with anticonvulsants and/or Baclofen (which I am on) I can live fairly normally. I have looked it up and find it is a subset of PNH (Peripheral Nerve Hyperexcitability). I can expect to live with exercise intolerance due to provoking cramping, decreased strength and aggravating muscle twitching. But at least it is not progressive. I have yet to see my own Neurologist to see what he says, The Baclofen is working somewhat, but as soon as I try to, say work in my 10′ x 10′ garden or in the yard, I can expect to cramp in arms, torso and legs. We may have to wean off Baclofen and try the anticonvulsants.

    • Hi Sami, thanks for sharing your thoughts. I’m glad you don’t have ALS or PLS. Would you mind saying how exactly it was determined that you have Cramp-Fasciculation Syndrome instead of the other conditions? As in, what sort of tests? Thanks so much. Indrani.

  84. Hi Aaron, I’m so glad found you on my forays into the web while researching PLS. My mother has been diagnosed (basically a process of elimination, really) with PLS. She first developed it back in 2003, we think, when she began to dragging her right foot… over the years, it got slowly worse. In 2014, my brother and I began to discuss MS, and we had her tested and the MRI brain scans were negative. We did not schedule a lumbar puncture even though it was advised. In late 2015, we suddenly lost my brother to a heart attack. He was my only sibling, and you can imagine the effect it had on my mom, dad and me. Ever since then, we have noticed her condition getting worse and her falls becoming much more frequent. She fell in May of this year and dislocated her arm and had a fracture in her arm. Ever since then, it’s been much worse because it was her right foot, and now her right arm is out of commission, and she’s now well and truly ensconced in a wheelchair. It’s been very frustrating for all of us, but esp for my dad and her, as they are very close, and he’s always around her and watches her progress closely. Anyway, I’m just very glad to read your site, and your thoughts. Glad to have met you. Take care, Indrani.

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