One sided muscle atrophy scared to death of ALS

[eric82]

Hello all,

A lot to read below, I hope someone still finds the time, very grateful for your time.

I am a 32 year old male who has been having a lot of problems within the last 3 years. It began with problems I don't think are related, I got chronic right sided headache, progressing into neck pain in the same side, then over the years I began getting pain in my entire right side of the body, from head to to, I got pain from the muscle leading from the neck to the scapula, then the pain extended into shoulder and right neck/throath, then the right ribcage, then lower right back, then right arm. A LOT of pain. I also had two episodes of vertigo for months were the ground shaked and jumped. Concurrently, I had fasciculations in my calfs and other places. I know most of this might be relevant. I had a clean EMG in 2012 with lots of fasciculations seen but otherwise then ok.

As bad as all this was, I could live with it.

Then maybe 5-6 months ago, following bouts of severe fatigue, I began getting fasciculations in my back, in the right scapula area where the pain was. My arms was getting stiff and very sore, my shoulder and shoulder muscles hurting like hell. I began walking staggering,a little to the left, a little to the right, I swayed when standing up, feeling like I was falling backwards and not always on balance.

All this while being followed by neuros who did tests for MS and other things, no one has suspected ALS so far, but things have evolved.

I went to a physioterapist for my right sided back, shoulder and arm pain. He looked me over and then told me 'your right side looks atrophied' the muscles running along the spine were much weaker, in his words 'sunken in'. The erector spinae muscles.

I then got other people to check and they saw the same thing. I noticed that my right pectoralis (chest) muscle was also now significantly smaller than the left and that the muscles overlying the right scapula (subscapularis) is 'sunken in' and pretty much a hole as my brother told me.

There is no doubt that my entire right side from the lower back to upper back to right pectoralis muscle has atrophied. Now I think the pain is not from overuse but from atrophy and shortening. I look at my right hand and I think it looks a bit less fleshy.

I was an avid weightlifter before and know my muscles and my body. I noticed that when I did hyperextensions for the back muscles my walking has improved when my muscles right after training are stiff. My poor walking seems to be because of lack of back muscle at least in one side.

I do not yet have any clinical weakness except my right hand which fatigues quickly and feels 'stiff'. After I use it, it might feel like it is sort of in the same position. I hurt a lot in the entire right back and arm section after excercise or doing anything really.

I also have a disc prolapse in C5/C6 with nerve root compression (same side as problems) and some medulla pressure, but surgeons tell me this should not explain my symptoms. I also tested positive for Lyme IgG but not IgM which doctors tell me means I don't have the disease now and that there are false positives. I have a lot (30+) white spots on MRI, which have never been properly diagnosed.

I am due for an EMG in 14 days, but I am worried sick. I had a lot of muscle mass in the past and I fear that though I don't have clinical weakness, what i am experiencing is muscle atrophy due to some motor neuron disease. There is no doubt my right side has less muscle than my left and I am a right handed. I fear the pain is from atrophy. I am very scared now.

 

[Atsugi]

Thanks for including all the details, Eric. Not ALS.

You've got some serious problem there, but you did NOT describe ALS.

ALS does not start off with any headaches, vertigo, "a LOT of pain," or bad balance.

Your twitching can be caused by many things.

The muscle atrophy is caused by other things, not just MND.

So keep your appointment and get that EMG, but don't worry about ALS.

 

[eric82]

Hi Mike,

Thank you for your reply. I have an EMG on monday and very nervous.

What also bothers me still is that I do not walk well. There's always some problem, a limp, swaying, stumbling, pain, stiffness, but what is worse is just standing where I feel unsteady, often feel like falling backwards. I was at a sleep study test yesterday, due to my overwhelming fatigue (also worries me) and when the nurse put the things on my upper body, even slight touches or pushes make me sway. I fear this is because loss of muscle in feet or hips or back.

I was also at my regular doctor and he noticed easily the atrophied back muscles and my almost completely atrophied infraspinatus muscle.

I then looked at my feet and notice I have very high arches. The tendons is my ankles always feel sore, I have sore muscles in calfs all the time and some of my toes often feel like they are curved downwards. I also have fasciculations in the rest of my body and had a lot of fasciculations in the scapula area where there is now atrophy. I can feel the one muscle controlling the toe next to my big toe running through my foot up the calf and it feels like it is not in the natural position. I read up on high arched foot and it can be because the straigthening muscles are athropied along with other conditions.

Sometimes my fingers feel weak when holding a plate, with my fingers underneath the sort of crumble under the weight, not every time, but maybe I don't notice always.

I wonder if my swaying off balance feeling is due to less muscle in the feet or legs now. I've had fasciculations and other sensations in my calfs for years now. It should not be painful or a constant struggle just to stand up. Keep in mind I ran just a week ago, so at least no problem there yet.

I am just very worried now. I really doubt that this is just some small issue. Question is what will come off it. The waiting is killing me, I want to get it over with, but fear the answer.

Thanks for taking the time to answer me Mike.

 

[Nikki J]

The EMG should show if this is ALS. Your symptoms, as Mike said,seem like something else and you note other things like the white spots on MRI that sound as if you are heading in another direction. Beyond that, though, until you have EMG results we can not say any more

I do not think Mike said it was a small issue just it did not seem by your description much like MND. There are so many things that can cause nasty neurological symptoms. Many of them are curable others are treatable. I hope your answer falls there. In the mean time try to distract yourself this weekend. You know very well I am sure that worry does not help. Please let us know what happens. Will think of you Monday

 

[eric82]

I read up on symptoms of high arched feet (pes cavus) and I am now very sure that my knee pain and back pain is the cause of it. I have all the symptoms of pes cavus such as very hard calluses on heels and heel pain along with tense calfs. I only hope this is some benign reason for it. My twin brother doesn't have any such problems though. Thanks for the encouraging words Nikki, I didn't think Mike called it a 'small issue' that's my own wording and I'm not a natural speaker. Thanks to both of you and enjoy your weekend.

 

[Nikki J]

Pes cavus makes me think of Charcot Marie Tooth

 

[lgelb]

If you really have pes cavus, there are several possible causes, including CMT, muscular dystrophy, spinal cord tumors. Unspecified white spots on imaging doesn't make a lot of sense to me. I would go to an academic neuromuscular center -- we could recommend one if we knew where you were located.

Best,
Laurie

 

[eric82]

Good news for now!

I was at the EMG appointment yesterday. Private hospital (most is government here) with a doctor who had 20 years experience in neurophysiology.

Had him first look at the atrophy in my back, he said it was 'slightly less' only. Told me he couldn't test it and didn't worry.

Had nerves tested, all normal, then the EMG I had it done above left knee (left foot had the problems) and in right bicep (right back and right hand had problems). Asked to get it done in calf, but he told me he never did that due to not getting good readings. In any case, both tests were normal, nothing unusual to see, not even any fasciculations. Of course he didn't test exactly the calf or foot, but I suppose it would show anyway and that he knows what he is doing. Agree?

Well, today I am in A LOT of pain in back, shoulder, neck, arm, so that hasn't changed. Neither has the feeling in my foot.

I am relieved that the EMG was normal and I even asked him about motor neuron and he said he saw nothing to indicate that. And he does have a lot of experience.

I guess now I have to pursue some other things (the borrelia, disc prolapse), but I am thankful that it seems I don't have a muscle disease.

I want to thank you for your kind attention, could you perhaps tell me if there is an organisation, research or other group to which I can make a donation?

Thanks again and bless you all.

 

[Atsugi]

Glad to hear your good news, Eric. Click the red button on top of the page on your way out. Enjoy.

 

[eric82]

Hey guys,

Back here again, still worrying, because the atrophy in my shoulder area is very pronounced now. It looks like this:

The problem is my lower back muscles on the same side are also atrophied and recently I began gettting fasciculations in the muscle between my thumb and index finger. I do have what looks like a ganglion cyst in that wrist on that side. My hand and arm has been shaking for some time now and as I wrote it seems like my right hand is less full at the fleshy spots. My hand hurts more and gets tired quicker. I have less grip strength.

I also have muscle atrophy in my right romboid muscle. All these muscles in my upper back hurt, then came large fasciulations and then one day gone. I read the story from Erica here who had very similar starting symptoms and was eventually diagnosed. She had almost exactly the same start and the shoulder, neck, back atrophy without weakness.

The EMG was normal in bicep and above left knee yes, but it was very brief and not in the muscles affected.

The waiting time is killing me, it's impossible to get in contact with dcotors, now I have to wait for the neuromuscular appointment.

I pray this shoulder atrophy does not spread elsewhere.

 

[Nikki J]

You are correct Erica initially had shoulder pain. However she stated noticing "weakness and atrophy" and then being diagnosed

 

[eric82]

Now I noticed I also have atrophy in right tricep, there is a dent there too when holding the arm in a certain position and I am also quite sure the inner deltoid muscle on the same side is much softer than on the left.

I am really beginning to worry. I have begun lifting weights again to try 'physio' out of this backpain, now I wonder if I have accelerated some sort of atrophy because of this. As far as I can tell my right bicep, lat, trap muscle is fine, so that leaves infraspinatus, supraspinatus, teres minor/major, triceps, deltoid atrophy and possibly in my right hand and lower back.

I wish I could say I imagine this but I am not. I have an EMG on the 10th but I can't stand the waiting and I have no current appointment with neuros.

 

[Atsugi]

Eric, one month ago, you said that one of the world's best neurologists examined you and you had an EMG, and the neurologist was not concerned about ALS. Now you're getting a second opinion on the 10th. That's good. You're doing all the right things.

Except one thing: You're still worried about ALS. Now you say that you are lifting weights and that when you hold your arm in a certain position, you can see slight atrophy. Is it possible that you are seeing your body take a different shape from the exercise you're doing?

 

[eric82]

Eric, one month ago, you said that one of the world's best neurologists examined you and you had an EMG, and the neurologist was not concerned about ALS. Now you're getting a second opinion on the 10th. That's good. You're doing all the right things.

Except one thing: You're still worried about ALS. Now you say that you are lifting weights and that when you hold your arm in a certain position, you can see slight atrophy. Is it possible that you are seeing your body take a different shape from the exercise you're doing?

Mike, I know, but the neurologist saw be months ago and didn't look at my shoulder. I don't think I had visible atrophy there. I KNOW I had atrophy in the beginning of February since a physioterapist commented on it

The doc doing the EMG only took bicep (no atrophy) and left knee (no atrophy). That isn't thorough enough, but the neuro did say that ALS was off the table with that test, but he did not test atrophied mucles and the whole thing was very quick. I also fear that I now have more atrophy.

For example, my left hand is now stronger than my dominant right hand. I can see the hand is less fleshy. I use a griptrainer and I can now do 5 more with my left than right. In the fall I could do ten more with my right. Of course this can somewhat be explained that the left was simply untrained (as is normal for righthanders) but the right should still be stronger from being dominant.

Mike, please see this image of the atrophy, it is not a good pic but only what I have, it is more visible from other angles. Keep in mind I was very fit before with many years of weight lifting on top a naturally bulky frame.

Picture here: http://i.imgur.com/Yt6e3Vb.jpg?1

You can see the dent clearly above the arrow.

I "hope" I am simply a case of annoying hypocondriac Something is going on though. It is made much worse I don't have any family with me now and they live in another country and if I have something bad, I can't even be sure I can move there and handle the legal stuff to be treated there. The thought of going through something like that alone is horrible.

 

[Atsugi]

I see muscle definition.

I'm glad your considering different opinions and I'm glad you're relying on your doctors. You asked for our opinions and we gave them. Be sure to let us know how the next EMG goes.