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charra

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Hello to all, and thank you in advance for suffering those of us currently living in fear but with no diagnosis.

I am a 40-year-old female with a history of viral infection in my 20s that absolutely attacked my nervous system. Shortly after the first illness, I began suffering a variety of neurologic symptoms, such as twitching, weakness, visible intention tremors, lightheadedness as well as vertigo (falling down), "mysterious" pains (unvisualizable through a variety of xrays and physicals), etc. etc.

About five years later, it mostly seemed to resolve. Other than very mild tremor and periodic vertigo, there were no lasting effects. Throughout those years, I had three MRIs and one brain cat scan, to basically no avail.

Fast forward to one and a half years ago, when it all started to begin again. Most notably I suffered terrible twitching, mild, pervasive cramping, and a great deal of perceived muscular weakness throughout my entire body, but mostly on my left (dominant) side. I received another set of MRIs (brain and cervical spine) and they came back clean.

At that time, my neuro was not worried about ALS (which I became increasingly convinced I had, in absence of a diagnosis), based on my physical exam. The symptoms since then have come and gone, and of course I realize that ALS doesn't "come and go." So please bear with me. :( The neuro and my GP prescribed an anti-anxiety med, which I took for seven months, until I got pregnant. The meds helped my frame of mind, but I still had much twitching and some perceived weakness.

During my pregnancy (son born 9/2/11), I had pretty much zero in the way of symptoms. I realize MS can follow this course--and believe me, I was convinced I had MS, since it can flare over years--but my MRIs are clean. Then, after the pregnancy, all the symptoms came back.

Now, yesterday morning, I had trouble holding a plate and also holding my pump (for breastmilk). This difficulty/weakness seemed to subside through the day, but the sensation of weakness was still there. My husband thought perhaps I just slept on it funny. This morning, the same thing happened, again with the difficulty seeming to subside through the day (but still with "weakness").

Then--and this is what is killing me--I looked at my arms. There is a very substantial difference in musculature between my forearms. This seems strange, since the left (affected) is my dominant side, so my guess would be that those muscles would be bigger (if this were just a natural variation on normal assymetry).

The arms look reasonably similar when unclenched, but if I have my palms up, and I clench my fists, there is quite a gap near my wrist (not in the middle where the natural dips occur around the tendons), where on the other side, there is a large muscle.

Where the gap is, is where I feel this strange weakness.

Sorry to be long-winded...but does this sound as alarming to you guys as it does to me? My neuro never ordered any EMGs or any other testing beyond the MRI.

Thank you so much. I am so worried, with a 5-year-old and a newborn :(
 

Alyoop

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You must be very busy with a new baby. It does not sound a thing like ALS, so please put your mind at rest. If you are worried and the weakness is causing a problem, you should go back and see a doctor. Best get checked out. ALS does not come and go as you have stated.
Best wishes
 

charra

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Alyoop, thank you for responding so quickly. I am so frustrated, and have been since March 2010 when these symptoms started flaring again :(

Do you, or anyone else who might happen to read my post, know if I could expect to be dropping things, be unable to open jars/button shirts or otherwise have severe weakness, if I can already see (or think I see) atrophy in my forearm/wrist?

Thank you again, I truly appreciate your input!
 

trfogey

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Since we have no way to observe you, we can't possibly tell you what physical manifestations you should or should not have with your condition. If you are concerned about these "symptoms" that you have, follow up with your primary care physician or the neurologist who treated you prior to your pregnancy.

For the record, I agree with Alyoop. Nothing that you've reported here sounds anything like ALS.
 

charra

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Thanks again, so much! I really appreciate the time you take to read, help and respond.

I sometimes wonder if the event in my early 20s is even related to what has been going on more recently.

And I realize that w/o any sort of visual on my arms that it's all just speculation.

But do you happen to know, as I had asked (and I'm sorry to repeat, I did hear you and I do know it's all guesswork): by the time one can actually *see* ALS-related wasting, would I have more appreciable weakness than the mild (but pervasive) weakness I feel now? Or is it just too all over the map, experientially, to make that sort of sweeping statement?

Thanks again. Sorry for whimpering and going on and on an all. :(
 

trfogey

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Clinical weakness and pathological changes in reflexes are immediate effects of muscle denervation. Atrophy comes later -- often taking weeks or months in larger muscles. You would definitely notice the weakness (caused by muscle paralysis) before you would see the atrophy.
 

HelenL

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Charra, obviously can't add anything to what the others have said in terms of "what is it", but did want to say hello and to enjoy those little ones of yours. My Mom has weakness in her hands, it's due to non-essential tremors, which is benign, but still weakness. Hopefully you'll find the reason for your weakness as well. I know I'm scared to hold onto babies at this point, and my hands are not affected that badly yet!

Take care.
 

charra

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Thank you again. This site and it's members are so helpful...I hate that it has to be here, but glad that it is. I'm sure you know what I mean.

You know, months ago, I did almost drop my son (the toddler, not the infant), but it was only a single occurrence. My legs gave out and I had to let him go. So strange. Stupid bodies.

Thank you again and again. I do have another appointment with my original neuro next Thursday...I hope not to feel the need to post about my results :/
 

notme

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It's fine to post your results. It helps those that come after you...especially when they are negative. It's entirely possible you slept on your arm wrong or that you have a trapped nerve. And yes, there would be obvious weakness and loss of function with atrophy from ALS. Good luck to you.
 

charra

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Thank you, all...I'm sure we're much like broken records, repeating variations on a theme. Your patience and grace are humbling. I hope that when my battle comes, in whatever form, that I can exhibit the same.
 
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