Viewing 29 reply threads
  • Author
    Posts
    • #17216
      Lisa Ryan
      Participant

      I have noticed in the last month more atrophy in my wrists/hands/forearms and my calves.  I can still do everything I need to but I do it in a way that is possible for me.  I definitely see reduced strength in my hands and arms especially the left side.  I am noticing atrophy around my elbow which is starting to have indentations around it.  My question is if someone was particularly muscular before symptoms started, is it possible that you could have atrophy but still be able to do what you need to?  I was pretty muscular and always exercising and lifting weights up until 2017.  Since then I have had to slowly stop exercising because it will make my muscles go crazy with fasciculations and I have no stamina anymore.

      Did anyone experience atrophy before loss of function?  I read a lot of things that say it is weakness before atrophy but that is not my experience.  Yes, I am weaker overall but I have adapted the way in which I do things so that I am functioning, just in a slower very careful way.

    • #17232
      Dagmar Munn
      Keymaster

      Lisa, I am not a medical professional but I can answer you using my own experiences.

      I too, at the time of diagnosis was extremely fit (and proud of my strength & muscles). The sudden onset of overall weakness and slowness in movement surprised and shocked me. My first reaction was to abandon all my exercises, but that led to further weakness. So, over time I learned that my traditional exercise routines were no longer possible (and almost felt “too advanced” for my body to figure out). I now do a vigorous daily routine of “simpler” movements. Example: crawling forward & back on hands and knees or full-body sideways rolling.

      About atrophy. Anytime we skip workouts and let our muscles get weak it is “atrophy.” I think you are noticing the diminishing of the size of muscles that you once had. This can and will happen. However, I believe that by doing daily range of motion, gentle stretches and, light strengthening exercises – – we can maintain an adequate level of muscle tone.

      You mention that you have stopped all exercising and, are getting around gingerly and with accommodating movements – – this “may” lead to more weakness and atrophy.

      Here are a few ways that I “keep moving” (now 10 yrs. with ALS):

      http://alsandwellness.blogspot.com/2015/10/a-language-that-speaks-to-all-bodies.html

      http://alsandwellness.blogspot.com/2015/07/do-you-rock-n-roll-als-exercise-tips.html

      https://alsandwellness.blogspot.com/2020/02/the-power-of-just-one-chair-squat.html

      Hope this is of help to you.

       

    • #17234
      Marianne Opilla
      Participant

      Hello Lisa,

      Dagmar’s blogs on exercise are great!  They were quite helpful to me.

      We all seem to have a differing presentation of loss of function.  For me, atrophy and weakness seemed to occur together.  I too, was muscular and very active, so mentally, it is hard to give up some form of exercise. You will have to figure out how much and intensity works for you.  I definitely have increased cramps and fasciculations with any activity.

      I was diagnosed Oct 2019.  I have tried all sorts of exercise, but have settled on a gentle yoga class 2 X weekly and have an electric tricycle. Occasionally go to gym and do some light eight machines. . I still take care of my self and do household chores, which I consider exercise.Don’t know if any of this has impacted my right hand, arm, and left leg atrophy progression.

      Try to keep moving and get outside!

    • #17237
      Lisa Ryan
      Participant

      Thanks for the replies!  Dagmar …I have read your story and I am happy to see such success and determination that has paid off!  You are an inspiring person, so positive and strong.  Thanks for the recommendations.  I don’t have a diagnosis but I have a gut feeling..and all of the signs.   What bothers me is the rate of muscle atrophy I am seeing. It’s scary.  It’s very noticeable to me from week to week.. I have never been a person to sit around but I am going to see if I can do some other light exercises as you have suggested, thank you.

      Marianne,  sorry you have been diagnosed with this.. I’m glad you found some exercises that you can feel comfortable doing.. a couple of years ago I tried yoga but I could not hold my position at all and felt so off balance.. there are lighter styles of Yoga that could work but I gave up trying to find something after the twitching became so intense that I can’t stand aggravating it more than I need too 😞.  I am on the go most days of the week, keeping busy doing household stuff which does use all my muscles but I find I am noticing I can’t do things without weakness and joint pain.. I am afraid I have MND and I feel like I need to conserve muscle energy but I feel lousy either way..

    • #17267
      Bill
      Participant

      With me I never experienced anything Id describe as weakness before atrophy. Atrophy in my still functional left hand is what caused me  to find a diagnosis. My arms were strong before onset. From start of atrophy in hand (and I believe lesser atrophy in shoulder) it has taken maybe 4-5 years to advance to a barely useable left hand and arm and shoulder. I tried to extend through band exercise for 2-3 years. Not a clue if it helped. Has not affected right  that I can notice yet.

    • #17285
      Lisa Ryan
      Participant

      Hi Bill, that is exactly my confusion because I can see obvious atrophy but I still have use of my hands and arms/legs.  I don’t understand it really

    • #17288
      Jeff Derby
      Participant

      Hello Lisa,

      before I was diagnosed with ALS I was playing old timers hockey in the winter and golfing/biking in the summer..July 2018 when I got the news I was feeling very fit and figured I could exercise at a level that would slow the progression. Over the past 2 !/2 years I have changed the exercise program from weights to bands and less resistance on the stationary bike, walker…what I have learned is some exercise on the remaining muscles helps keep them longer. For me nerve twitching starts in an area before muscle atrophy begins, this can be many months…I was told by my neurologist that the twitching is part of the disease, and indicates the nerve and muscles are still active…when the twitching stops it is because the nerve has disconnected from the muscle..so I learn to live with and appreciate the twitching. hope this helps a little.

      • #17333
        Lisa Ryan
        Participant

        Hi Jeff, thanks for your reply.  I didn’t realize that you could be diagnosed with als and still be very strong, most of the time it seems like people have lost use of a limb before diagnosis,…from what I have read.  You seem to be able to keep your body in good shape by exercising.  I am not actually performing a type of exercise except I have always been a busy person always doing physical things.  I have been able to still paint walls and lift groceries up stairs and run around after 3 grandchildren…but it does take a lot of my energy and I feel if I overdo it then I will be really tired the following days.  It seems like it might be a balancing act of sorts.  I have been twitching since 2016.  At first it was just lower but as of 2020 it moved to upper body areas so now i have widespread twitching but it is always the very worst in my calves and feet.  I have neurogenic changes in my right calf and that is where it started.  I understand how you might feel more kindly towards your fasciculations.  That is a good way of looking at it!  I wish you the best!

    • #17293
      Bill
      Participant

      Lisa,

      I believe even with atrophy we retain strength. When I first measured strength of atrophied left bs right hand , I was 100# right 75# left. Not enough difference that I knew it. As far as arms and shoulders I think non atrophied muscles carried more load so I barely noticed. That was 4 years ago. I can’t register strength in left hand now but right likely near original strength. I can’t raise left arm over about chest height. In all mine atrophied preceded strength loss as far as I can see. For what it’s worth my ALS appears very lower motor neuron driven vs upper motor neuron. Atrophy vs stiffness and weakness.

    • #17294
      Bill
      Participant

      Lisa,  ALS is a family of diseases with widely different progression and start points. What one person experiences and does may not apply to you. Sadly, I’ve found the science lacking. I’ve had the talks with multiple PT’s and neurologists. Haven’t heard much more profound than don’t hurt yourself and don’t over tire yourself. That and stay active and maintain range of motion. Pretty basic but true. If you are experiencing stiffness or spasticity I think PT can help. I just have not had that so far with my ALS.

      • #17334
        Lisa Ryan
        Participant

        Hi Bill, thanks for all the info.  I guess I was just mistaken about weakness before atrophy.  I can see what you mean that stronger muscles will make up the shortfall of the weakened muscles…makes sense.  Did you get a diagnosis of PMA instead of ALS if you don’t have any upper motor neuron signs?  I have a lot of stiffness but I don’t know if it is just osteoarthritis or age or UMN.

    • #17310
      Aloha Frank
      Participant

      Hi Lisa. I experienced just what you describe before I was diagnosed with ALS last March. Like you, I’ve always been an extremely fit person, so I noticed the loss of muscle tissue on my left side and obvious signs of atrophy right away. My right side remained as strong as ever, but arms and hands on my left side rapidly became weaker to the point where they no longer function. Can’t even raise my left arm above my waist or pick up a pencil with my left hand now. Thankfully, I’m right-handed. So far the loss of muscle on my right side, while definitely getting weaker, isn’t progressing nearly as quickly as my left side did. My neurologist advised me not to exercise, explaining that muscle tissue will continue to waste away no matter what. He went on to explain that remaining muscles have to work harder to make up for tissue already gone. As we all know, ALS responds differently from one person to the next. There are so many unknown variables. After much research about the disease I accepted what was happening to me and decided early on that it is what it is with no realistic hope of slowing it down, let alone medical science finding a cure in my lifetime. I will not accept any ‘treatment’ or participate in any trials because of the unknowns. While some patients hang on and hope for a cure (and I honestly wish them well), I’m going to ride it out with the hope that my life ends sooner than later. Struggling to get by from one day to the next with this dreadful disease is not living to me, it’s merely existing. The pain and suffering I must endure every single day, not to mention the heavy burden caring for me others must carry, is not worth it.

      • #17335
        Lisa Ryan
        Participant

        Hi Frank, thanks for your comments, I appreciate them.  I am truly sorry to hear of your struggles.  I can really empathize with all of the people that are living with this disease.  I am glad for now you are still able to use your right hand.  What is strange about my forearms is that both the left and right are equally wasted but my left hand is very hollow where my right hand is stronger and isn’t as wasted.  I am sure I have right deltoid wasting, my shoulder looks very strange, I also think my upper back muscles are wasting, my massage therapist thought that.  Both of my feet have really thinned out so they look equally wasted.  I don’t know about my situation but someone on facebook has said that with my symptoms I 200% have als or if not it would be a miracle if it was something else.  They are experiencing the exact same things I am.  I am trying to deal with this uncertainty and it is very hard to understand which muscles are wasting and if it is symmetrical etc.

        I truly want to say I do understand what you are going through and the mental strain of having to rely on others for your care.  That is what scares me the most, I am a very independent person, having relied on myself most of my life never asking for help.  I hear you loud and clear on that.  I will send you best wishes for now!

        • This reply was modified 9 months, 2 weeks ago by Lisa Ryan.
    • #17350
      Aloha Frank
      Participant

      Hi Lisa. Thank you for your thoughtful response. While it sounds like you have ALS, I’m sure any neurologist can make a definitive diagnosis after conducting a few tests. In my case, the constant loss of muscle tissue follows no obvious pattern. I can sense it happening to various parts of my body, the latest being in my neck and back. I already have an electric wheelchair and not a moment too soon. I suspect within another week or two I will no longer be ale to stand, even with a cane or walker. With my new chair at least I’ll be able to ride around outside and enjoy this beautiful Hawaii Island my wife and I call home. Last year was not a good year for me health-wise, but 2021 will only be worse. I suspect any reasonably effective treatment for ALS is decades away and a cure is but a dream. I sincerely hope your doctors find that you have something other than ALS, something they can treat. I wish you all the best and will continue to watch for your posts on this forum. God bless!

    • #17357
      Lisa Ryan
      Participant

      Thanks for the well wishes Frank.  If I do get diagnosed with this my dream is to visit Hawaii.  I love traveling so much and with this Covid going on, I haven’t been able to look forward to that yet but I will take a trip asap!  What a lucky guy to live in Paradise.  The sun and salt air will be so good for your mental health and with a powered wheelchair, that is sweet freedom!  I wish I could do that!  The mind body connection is so important, think beautiful positive things while on your tropical travels in your new wheels! Hahaha!  I am buried in snow and cloud in Northern Ontario, I can only hope the winter goes by fast so I can get outdoors!  Stay well my friend! X

    • #17368
      Bill
      Participant

      Hi Lisa,  no I’m still ALS as far as diagnosis not PMA.  I am also have atrophy of tongue and bulbar muscles. Time will tell how I progress. I do discuss progression with the Drs though.

      • #17374
        Lisa Ryan
        Participant

        Thanks Bill.  I also think if I do have this it is LMN dominant.  My atrophy seems to be the biggest feature along with cramping muscles and fasciculations.  I believe I can see that my tongue is narrower now 🙁

      • #17381
        Aloha Frank
        Participant

        Hi Lisa. Hopefully you’ll be able to follow your dream and travel to Hawaii before your illness gets any worse. I wish I would have traveled more while I could still walk, but the pandemic and all the confusing lock-down restrictions made it nearly impossible to enjoy visits with family and friends on the mainland. I was born and raised in Maine. Joined the Air Force after graduating from high school and eventually was assigned to a secret joint military installation here on the Island of Oahu. I loved living here so much that I never went back to the snow and cold winters of Maine after my discharge from the Air Force. We bought a beautiful home across the street from a spectacular semi-private beach where my three sons learned how to swim and surf before they were five years old. I have no doubt you would love it here. Please let us know when you finally get diagnosed with your illness. I’m hoping it isn’t ALS, but rather something else that offers effective treatment options for you. Wish you nothing but the best for the new year.

    • #17369
      Kathy stitz
      Participant

      Hi Lisa,

      Do the doctors not know whether or not you have ALS? You were saying you think your symptoms are indicative of ALS.  I was active as well before being diagnosed last June.  Now doing anything takes more time and effort.  Even taking a shower and getting dressed makes me exhausted.  I do some chores around the house but it makes me tired and I have to sit down.  I have lost a lot of weight and I was already thin to begin with. My body is becoming weaker and I have muscle twitching and cramping.  I hope you get answers about your symptoms and best wishes to you.

      • #17397
        Lisa Ryan
        Participant

        Sounds wonderful there Frank.  How lucky your kids were to have grown up in such a beautiful place!  I don’t blame you for not going back to Maine, I’m not too far from there near Toronto Ontario and If I had a place I could go to like Hawaii where I was a citizen, I would never return to the cold either.  I will post an update when I get one or after my next appointment.  Thanks for the kindness 🙂

      • #17398
        Lisa Ryan
        Participant

        Hi Kathy, sorry to hear about your diagnosis 🙁  I believe my Neuromuscular specialist suspects ALS.  He hasn’t ruled it out.  My last EMG was in September where he found chronic denervation in two of my right leg muscles, Tibialis and Medial gastronemius ??  I believe I have split hand syndrome and the muscle between thumb and index finger had abnormalities and wasting.  He is being very cautious saying that we are just going to keep an eye on things and he ordered bloodwork for rare nerve and muscle diseases.  The results should be in soon.  I think he is suspecting it but said because I don’t have widespread changes on emg that he said he doesn’t “see it”.  He wont rule it out though.  I have twitching and cramps, lots of symptoms that fit.  I am losing hope each week.

        I hope you will get a plateau in your symptoms.  What was the main reason for your diagnosis….EMG?

    • #17407
      Kathy stitz
      Participant

      Hi Lisa,

      Thank you for your message.  It can take a really long time to diagnose ALS.  For me, it was 9 months.  During that time I went to different doctors and had a lot of testing done.  There is no definitive test to diagnose ALS.  They have to do a lot of testing to rule out other conditions that might be causing a person’s symptoms.   I suppose the EMG was one of the reasons for the diagnosis.  I also had other tests like MRI’s and blood tests like you had mentioned.  In my case, they just did the testing and eventually told me I had ALS.  They didn’t really go into an explanation of what caused them to think that.  I did go to 2 different ALS clinics and both said I have ALS.

      I am sorry you are experiencing so many difficulties.    I hope you can get treatment for the symptoms you are having so that you can feel better.

    • #17424
      Lisa Ryan
      Participant

      Ok, thank you for the info.  I wish you the best!

    • #17426
      Kathy stitz
      Participant

      Lisa, keep us updated on how you are doing if you feel comfortable doing so.

    • #17500
      Lisa Ryan
      Participant

      I will.  At this point I am just noticing very big muscle twitching in my thigh and my biceps and near elbows.  I also see more thinning of my forearms and hands.  My right thigh is getting very flat on the front and right side whereas my left thigh is better 🙁  I am scared to have a confirmation of ALS but I want to know.  I could call and make an appointment for another EMG, they wouldn’t say no.  He told me if things change to let him know because I am under a wait and see protocol.

    • #17524
      Suzanne Akerman
      Participant

      Today a lady I had replied to a comment she made was messaging me all day. 50 years old, she stated she had pins and needles pain, atrophy of her previous bodybuilding body, a major weight loss, fatigue. Very fast progression over four months. She still didn’t have a diagnosis, dismissed by doctor after doctor. Little family support. She seemed frantic. She was sure she has ALS. I told her to contact her local ALSA, and that I found my local chapter helpful.

      • #17672
        Dagmar Munn
        Keymaster

        Suzanne, you did the right thing in suggesting that person contact their local ALS Association. Thank you.

        If any of our members feel they are being “over-messaged” or bugged, or harassed by another member… please do not hesitate to contact either Amanda or me. I’m not inferring you were harassed, but we are all dealing with our own issues and even though we want to help others – – their ALS journey and issues may overload us. So, don’t feel bad about reaching out to Amanda or me.

        That being said, this forum discussion has been very helpful to many members. Thank you all for your sharing your thoughts and opinions.

    • #17536
      Lisa Ryan
      Participant

      I might give my local chapter a call to see if they can suggest anything.. that’s a good idea. What is wrong with these doctors?? Can’t they take people seriously, why do dismissive.. so frustrating!!

    • #17652
      Kiki
      Participant

      Hey Lisa,

      I just came across your thread. Just wondering how you are?? At the moment I am also in the middle of getting diagnosed. Like you I still have a little hope left. Also I read a lot about the Emg. Since you wrote that you had several dirty Emgs I am wondering what takes neuros so long to come up with a diagnosis. I read that with 2 denervations in 2 different muscles you are diagnosed with probable or possible ALS? Surely you came across that too. Here in Europe we have a blood test for neurofilament light chain markers which are increases in ALS.  The test is not 100% as this biomarker is increased in stroke and alzheimers too. This is why they hesitate to use it but how likely are the two others with typical als symptoms. Perhaps you can request that too otherwise it is done via lumbar puncture.

      Just ask your neuro for it. I have my next emg in late spring perhaps may and will ask for the test too.

      Best wishes,

      Kiki

       

    • #17658
      Anonymous
      Inactive

      ALS is diagnosed based on an international standard called el escorial  criteria. Linked is a PDF that might explain how it works.

    • #17669
      Romy H
      Participant

      Hi Lisa,
      First please go get tested!!! You will not want to wait to begin physical therapy and any medication that is available to help slow this down for you if you have it. Trust the advice here as it is golden from people who know. My twin sister lost her fight June 2020 and this site was my support in addition to life line. I was so devastated, I actually understood how one twin can find it impossible to go on. I am strong enough to but realized just how much it tore me apart. She was very athletic and her first signs were diminished strength, then came the balance issue, after that it was her ability to walk. Her hands began curling next and then she was bedridden. In between these developments was a diagnosis once we convinced her to see a Dr. However she waited far too long for help that is available for ALS sufferers. There were many things offered to her free, a Van for her wheelchair, and a lot of help. I encourage you to relax and wait for your Dr appt which you need to set before you add stress to your life with this possibility. There are other conditions that can cause your symptoms and trust a professional to diagnose you. I have been concerned myself as being a twin and losing my twin to it. However, my tendon issues are from overworking my hands and I don’t have other signs. It did not stop me from worrying though and I even called her fiancée to find out exactly how her hands felt which he said had no pain. Mine sting and swell when I do anything strenuous and forget lifting weight..my arms and muscles look fine tho. I have seen a Dr and they have told me there are no signs at this time of me having it. I am not in the clear being a twin but will be attentive to any signs and go TEST immediately if they develop. My daughter moved to Hawaii last summer and loves it. When I joined this site, it was to educate myself and get support for my loss. My family just can’t understand how this has impacted me. Only a twin would completely get it and I accept this. I sought out my own support which this site has afforded me. I read the posts and information which helps me learn even more. If I get ALS, this will be a blessing to continue coming to this wonderful site. People here are so supportive and helpful with no judgment.
      Big hugs!

    • #17681
      Lisa Ryan
      Participant

      Thanks for all the input, much appreciated.  Kiki, I am struggling with increasing atrophy and stronger fasciculations and cramping presently.  They do need to see denervation in a few places but I haven’t met that criteria yet I guess so I am being monitored for changes.  I will ask about the neurofilament light chain markers, I did not know about that.

      I am getting a call from my Neuro this coming Friday at 8:30 am.  I will worry until that day because I usually build up my expectations and think I may get answers but come away disappointed usually.  I will be receiving the bloodwork results from numerous nerve and muscle panels.   Hoping to get more info. Thx

       

    • #17682
      Lisa Ryan
      Participant

      Hi Romy, first I am saddened to hear of your dear sweet twin, such a tragedy.  I hope you reach out for support wherever you can, you need that help.  I will ask for an EMG for March which would be a 6 month span between the last one.  I know that time will help you with your great loss.  Stay strong there are better days ahead!

    • #17691
      Kiki
      Participant

      Thank you for your response Lisa, I really hope that you will receive answers this Friday. Guess the questions you ask depend on your Neuro. If you are still open for other causes he will surely not put you in the anxiety corner but with a confirmed atrophy and your increasing symptoms you have definitely the right to ask for another Emg.

      The NFL blood test is just a very new biomarker that is done here additionally to the mentioned EL criteria. Many people with ALS symptoms get tested here at the Charité in Berlin its around 100€ per Test; increased NFL markers also show how fast the disease might progress. Even if the Emg criteria still has to be met to get an ALS diagnosis, the test is at least sth for oneself to possibly rule out ALS if the markers are low. Further I read on another forum that a woman with confirmed atrophy had a hormonal issue causing muscle waste :

      https://www.als.net/forum/yaf_postst57502_Eurika-I-found-the-cause.aspx

      Just try to help a little as I know how it feels like to be stuck in limbo with ALS. My hope is still Myasthenia gravis although the twitching and cramps (which I have too) do not occur in that disease.

      Just hope to help a little. Keep us informed. Best wishes

      Kiki

    • #17707
      Mike Leist
      Participant

      Hi Lisa. I’m sorry to hear of your issues, and a possible ALS diagnosis. I was diagnosed 5 years ago, and here is what I have learned. I continued to exercise at normal levels for about 3 years after my first symptom. Head drop impacted my ability to paddle on the water (dragon boating was my sport ), but I continued to walk and lift weights until my balance got bad, and I went into a wheelchair. I kept journals of my workouts, and learned two things about exercise and ALS:
      1- Be consistent. The old addage “use it or lose it” applies to everyone, but exponentially so for us.
      2- We don’t recover like healthy people. Most athletes push themselves to failure, recover, and do it again to build strength / stamina. If you train like this with ALS, you can cause your muscles to lose strength faster if those muscles are impacted. So, train in moderation.

      Best of luck to you in your journey.

      • #17717
        Dagmar Munn
        Keymaster

        I agree with your observations, Mike. “Be consistent” – – my body needs daily, gentle therapeutic movement. Skipping a few days leaves me feeling stiff and with uncoordinated movement. Regarding “recovery” – – yes, we can’t push ourselves like before. Instead, I break up what would be an hour routine into several 15-20 minute sessions throughout the day. And no heavy weights, strain or pushing. I even had to learn to regain what I lost; one repetition at a time:

        The Power of Just ONE Chair Squat

        I follow the advice of those who research exercise and ALS: one hour following doing exercise your body should feel recovered. If not, that’s a signal to adjust what you’re doing down a few notches.

    • #18195
      Lisa Ryan
      Participant

      Hi everyone,  I can’t believe I posted this thread 3 months ago and I am still confused about the progression of my atrophy.  I find I am back to square one again, researching things I have already looked at 25 times.  It is so noticeable to me how many more tiny veins I can see on the top of my hand and how more hollowed out my left palm is, my wrists are ridiculously thin and my forearms look carved out, very hollowed areas.  My shoulder bones are more noticeable and look like I am hunched forward, my pectoralis muscles are gone, my bicep on the sides of my arms are indented, ankles thinner.  The back of my calves are flat with a small bump of muscle at the lower end of my calf.  My right thigh is noticeable much smaller than the left.

      This is all progressing, time is going by but I am still able to do things.  I feel weakness and pain in my fingers hands and wrists when I push to do too much, an ache sets in after.

      I really feel like I am either out of touch with reality and I am exaggerating somehow what I am seeing or….or I don’t know what.  Literally everything has been ruled out.

      I will be speaking to a genetic counsellor on Tuesday.  My neuromuscular Dr. set this up because a gene came up for Limb Girdle Muscular Dystrophy but I only have one gene so I am only a carrier.

      I am really struggling mentally getting more and more depressed, doubting my own eyes and what I see.  I just cannot understand how this can be happening to me and I do not have a diagnosis.  I am at a loss for any hope of any answer.  I don’t know how to keep dealing with the atrophy and weakness without any hope of a diagnosis.  This is pure hell …I feel hopeless and lost.  It’s impossible to live like this in constant thought and worry.

      Thanks for reading.  I needed to get this out.  I am so down right now.

    • #19154
      Russell
      Participant
      1. Lisa , hope your doing well. I’ve been going tru the same as you. Atrophy of my left leg ( quit severe ) and my right gluteus.  My hands and shoulders ache and my emg showed chronic denervation also and a muscle in myvleft leg that the nerve died to. Feeling some twitching and shoulder tremors also.Still can walk and talk well. Was told no ALS and have another appt in 1o weeks.. Please hang in there . Keep in touch.
    • #19834
      Lisa Ryan
      Participant

      More confusing symptoms continue.  I had an internist looking into my chronic cough.  This led to a lot of Pulmonary Function Testing.  She finally said she can find no mechanical reason for my cough and finally tested the strength of my breathing muscles.  I just recently got the numbers only (no report yet) from my GP and it showed:  Maximum Inspiratory Pressure MIP of 48% of predicted 120%.  The Max. Expiratory Pressure MEP was 71% of predicted 146%.  From what he could tell me which wasn’t much because he said he does not understand it to that level is that my breathing muscles are weak.  The internist told me in January that if she could find no reason to explain my shortness of breath on exertion and constant cough without being able to clear my throat all the time she would send a letter to my neurologist.  That has not happened yet.  I am still seeing progressive atrophy of my shoulders, chest, elbow, forearms/wrist etc.

      I had a real shoddy second opinion at a different neuromuscular centre in which the doctor only praised my previous doctors.  He spoke to me for under 10 minutes, did some clinical in under 10 minutes, all while I was sitting yet reporting that I had walked on toes and heels etc. …you get the idea.  My emg was less than 10 minutes and he checked only 6 muscles…asked me which ones were bothering me and what side I wanted him to test.  He did say that I could have a second muscle biopsy this time on my bicep but that I would need a surgeon to do  it.  That was two months ago, no further word from any doctor.  Meanwhile when I am laying flat in bed I do find it harder to breath.  Having some weird issues waking up feeling like my throat is closed up. 🙁

       

Viewing 29 reply threads
  • You must be logged in to reply to this topic.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account