Confused about progression of symptoms

[Dagmar]

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.

 

[Christina Birdsong]

Hello,

I have experience muscle wasting, particularly in my right leg and arm. Even the right side of my chest has muscle wasting. When I went to Johns Hopkins, where I was diagnoses, they referred me for 6 months of physical therapy. It has worked wonders. They acutally got me off the walker and onto a cane (for now). I’m now able to walk farther because I am stronger. The PT person is working on building up finer muscle fibers, our support muscles when the larger muscles are too affected. I wish you the very best. Consider physical therapy.

Chris

[Marianne Opilla]

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!

[Lisa Ryan]

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..

[Bill]

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.

[Lisa Ryan]

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

[Jeff Derby]

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.

[Lisa Ryan]

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!

[Bill]

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.

[Bill]

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.

[Lisa Ryan]

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.

[Aloha Frank]

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.

[Lisa Ryan]

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!

[Aloha Frank]

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!

[Lisa Ryan]

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

[Bill]

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.

[Lisa Ryan]

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 🙁

[Aloha Frank]

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.

[Kathy stitz]

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.

[Lisa Ryan]

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 🙂

[Lisa Ryan]

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?

[Kathy stitz]

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.

[Lisa Ryan]

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

[Kathy stitz]

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

[Lisa Ryan]

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.

[Eric Jensen]

An EMG is a user subjective test. The experience of the neurologist/neuromuscular specialist is how it is subjective. I had an EMG done a month ago showing little issue. This month, when I went to Mayo, the experience of the provider found radicle denervation. Schedule another test. Get a second opinion. This is your life and you live your symptoms daily. Be your best advocate! Good luck..

[Suzanne Akerman]

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.

[Dagmar]

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.

[Lisa Ryan]

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!!

[Kiki]

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

 

[Eric Jensen]

The test is abbreviated NFLC and is being used by the Mayo Clinic.

[Deleted User]

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

[Romy H]

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!

[Lisa Ryan]

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

 

[Lisa Ryan]

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!