Searching For Answers Since April - I need a hand

[MMLLS]

Hello, first off I have a friend with ALS in the advanced stages. I have a lot of respect for him and others who have been diagnosed with this terrible disease.

My story is I'm 39 years old and in August this year I was diagnosed with Idiopathic Brachial Plexus of the upper right extremity but I'm not certain the diagnosis is correct. I had MRIs performed (head, neck, right shoulder), probably 20 blood tests and two EMGs. The first EMG was performed by a local doctor. A month later I went for a second opinion at a nationally top ranked hospital and the 2nd two and a half hour EMG was abnormal but only in the upper right extremity thus, I think, their diagnosis.

Since then I've had continued fascs all over my body and pretty much at all times. The fascs started in early July. I also have persistent cramping sensations in both calves, burning cramp in left pec, left shoulder blade with burning and pins and needles. It's gotten so bad that I have to dock both my arms due to the pain if I'm standing.

I'm an avid weightlifter and former runner. Last year I was built like a tank and could bench 315 pounds. This year I'm up from my lowest point but can only do 190 and I can't run without pain in the a fore mentioned areas. After the diagnosis my doctor instructed me to continue to lift weights to build back my upper right extremity, which showed atrophy (still does), and take Gabapentin. They leave the door open for more testing IF my strength levels off or worsens.

The good news is to date my strength is okay, I have continually tracked slow improvement but the pain is getting to be off the charts, the fascs continue all over and my symptoms involve areas outside of my upper right extremity which worries me. This is a top nationally rated hospital but I'm afraid they have it wrong and this could be something worse. Can anyone relate to this diagnosis or offer advice?

 

[affected]

I'm sorry about your friend.

Would you mind using paragraphs when you post as our PALS won't be able to read chunks of text like that, I barely got through.

You don't describe any ALS symptoms I'm happy to say. Twitching and cramping means nothing. Pins and needles and pain are not ALS either. If you tell me your friend with ALS has pain, let me assure you that was not a presenting symptom for your friend that pointed to ALS, it is a later symptom as the disease advances.

Follow the advice of your doctors or go to another one, but you need to be examined and tested to get the best help.

 

[MMLLS]

I'm sorry I didn't think to type it that way. I will next time.

Thank you for responding. I appreciate your insight.

 

[MMLLS]

Could ask you a quick question? As I stated above I was diagnosed with Parsonage Turner or Idiopathic Brachial Plexus of the upper right region (shoulder, arm, back, etc.) in August. Yet I'm deeply concerned about my symptoms outside of that region.

After 2-3 months of electric fascs in my right foot and calf I noticed yesterday what could be a missing chunk of muscle.

The last time I noticed a chunk like this it was in my right forearm which spread down to my wrist... yet I don't have clinical weakness and that went along with my diagnosis because it was within the upper right region.

Here are a few photos of my right foot. Do you think this could be atrophy caused by ALS or something else? Does it qualify as atrophy?:

https://www.dropbox.com/sh/s0nhkysn6kpzvsl/AACqVdf7ielRkpM6bsN2qwpla?dl=0