ALS

[JimUB]

Hello, my name is Jim and I am a 51 year old sculptor and art professor in Columbus, OH. I am in very good shape (amateur all-natural body builder), and this year began experiencing health issues (have never before). I will try to keep this succinct, but I apologize if it goes too long.

In January I was diagnosed with a small rotator cuff. When I mentioned to the therapist that I was also experiencing constant numbness/tingling in my lower arms and hands (index and middle fingers), and that it was now going on in my lower legs/feet. This ended up progressing to painful burning feelings across my shoulder blades which woke me at night and strong back spasms whether active or resting.

My sports physician sent me to a neurologist; in the time it took to get into see her, I began to experience numbness and tingling in my face (especially around my eyes) and tongue. After running blood tests (including heavy metals) and an EMG (which came back normal, but with some "extended responses" that she assumed had to do with my height), she said she could not help me and sent me to another neurologist.

The new neurologist has definitely helped, ran brain and spinal MRIs (which are fine) and a QSART test. The QSART results revealed I had small fiber neuropathy and began trying different meds (nortryptyline, Cymbalta); unfortunately these helped only marginally. I have now been placed on Lyrica and an anti-anxiety med.

Here is my dilema: the numbness/tingling in hands & feet (and now throughout the body) are more mild now, but still occur. The numbness in my face and tongue have increased, and I often have to carefully enunciate to make sure I don't lisp "trip over my tongue." I have muscle twitching and fasciculations (I believe that is the right term) throughout my body, mostly in my legs but also in my head and on occassion in my tongue and eyelids; the fasciculations seem mostly in my calves. I often get odd sensations in breathing - it feels like I've accidently inhaled an aerosol, feeling it in my sinuses and in the upper part of my lungs. My balance is off, and currently is better than it used to be. I tire easily, a new thing for me. I continue to work out, and my strength is okay, but my stamina is shot. If I try to run, I quickly lose leg strength. My feet are tight and sore, and I often feel random tightening of calf muscles.

My physician is aware of all of this. On my last visit, the in-office test found I have good, strong reflexes, and all other strength tests were good. My balance is still off, but as I said was better than last visit. At this point, I am very frustrated because I still have no real idea about what's going on and how to address it. It has been 10 months, and it continues to change or intensify. My physician has indicated I have idiopathic small fiber neuropathy but it doesn't seem to explain everything - and the facial numbess has not been addressed. He has admitted that he's not what's going on.

I tried keeping a "symptom diary", which seemed to be a piece of common advise. When I brought this into my physician, he suggested the maybe I am so aware of what's going on that I'm exacerbating the problem. I can understand his point, but it still doesn't take away the fact that this is continuing. He does not want to do another EMG right now (it has been 6 months), and wants to wait 4 months to consider it.

As you can tell, I'm frustrated. I'm the sort of person who, when they identify a problem, tries to identify a solution. I just want to understand what is happening, if I should get a second opinion, or of there is something else going on. If I'm worried about nothing, then I'd like to know that. I'd just like to address this and move on. Obviously, I have some suspicions, since I have posted in this forum, but really don't know. If you made it to this point, thank you for your time and consideration.

Sincerely,
Jim Bowling