ListlessOne
Well-known member
Hi! Today was my fourth neuro visit and the FIRST time I have been told I have brisk reflexes or noticed them. They were VERY BRISK looking. He said 3t+ symmetrical knees 2+ symmetrical upper. He was a little surprised by them as was I and he tested them three times. I was a little nervous but I have been nervous during all of my neuro exams, so I am worried that its progressing! Again, Ive only been at the twitching thing for a little over 2 months. This neuro was a neuromuscular specialist at a major University which Im glad I saw. For those following my incessant posts (sorry!) I am the "burner." I have burning pain all over my neck and traps and sometimes all over- patches on my hips, my head, my thighs, butt, my lips. My arms feel permanently with lactic acid in them. Most thumpers in upper arms but I do twitch all over to a lesser degree. I have terrible occipital head/neck spasms, and these pretty much started out of the blue a few months ago as well and i spend most of my time in pain even though I have been doing yoga, going to chiropractors, physical therapists. Have toe/foot cramps as well. He did say some reassuring things to me. First he said "I don't know why everyone associates twitching with ALS, Its not related, usually anxiety produced." Second, he said to me that based on my exam he thought I had as much of a chance of having ALS as he did. He said of all the thousands of patients he sees mostly serious, he said I was in the "minor concern" category (he did it with a visual of his arm high to low so I guess thats good
)). He said ALS does not present with burning (although why do I sometimes see that ALS has sensory symptoms??). Anyway, he said he is going to test me for small fiber neuropathy and autonomic. He said after we do the test he will give me something for the pain which I am desparate for. Klonopin does zero for me except put me to sleep. He saw my clean EMG but said he wanted to repeat it more extensively (that got me worried). He said he was not looking for ALS but for cervical radiculopathy and MM neuropathy whatever that is. So Im off to Disney to try and enjoy some time with my family but feel worried by the "new" briskness in my legs. I am also of course worried that the neck and shoulder pain are somehow ALS related even though all the PT's and chiros said I am full of knots not weakness - I can still lift weights no problems, I just pay for it 2 hours later with the burning and pain. Anyone else with after workout intense muscle soreness after use? I guess Im putting myself in to the "rare" category of presentation (not distal, but neck). Ive just never been a chronic pain case before, and you would think a few good weeks of stretching and therapy would do the trick but this neck and shoulder pain are NOT going away, and them coinciding with the twitching and muscle cramps and spasms still has me very worried!! I am so sad inside. I really wanted to enjoy this trip with peace of mind and without this immense terrible pain. I guess I have it from 4 neuros, the irrational side of me is conjuring the possibility of "WHAT IF." He did say to me "if I thought you had ALS you would not be going on vacation, I would be testing you right now." anyone else with neck/shoulder issues, chronic back of the neck pain or brisk reflexes? My CPK is supposed to come back tomorrow and god forbid its high I will lose my mind. I almost don't want to know before the trip. I need some words of encouragement guys. THanks
)). He said ALS does not present with burning (although why do I sometimes see that ALS has sensory symptoms??). Anyway, he said he is going to test me for small fiber neuropathy and autonomic. He said after we do the test he will give me something for the pain which I am desparate for. Klonopin does zero for me except put me to sleep. He saw my clean EMG but said he wanted to repeat it more extensively (that got me worried). He said he was not looking for ALS but for cervical radiculopathy and MM neuropathy whatever that is. So Im off to Disney to try and enjoy some time with my family but feel worried by the "new" briskness in my legs. I am also of course worried that the neck and shoulder pain are somehow ALS related even though all the PT's and chiros said I am full of knots not weakness - I can still lift weights no problems, I just pay for it 2 hours later with the burning and pain. Anyone else with after workout intense muscle soreness after use? I guess Im putting myself in to the "rare" category of presentation (not distal, but neck). Ive just never been a chronic pain case before, and you would think a few good weeks of stretching and therapy would do the trick but this neck and shoulder pain are NOT going away, and them coinciding with the twitching and muscle cramps and spasms still has me very worried!! I am so sad inside. I really wanted to enjoy this trip with peace of mind and without this immense terrible pain. I guess I have it from 4 neuros, the irrational side of me is conjuring the possibility of "WHAT IF." He did say to me "if I thought you had ALS you would not be going on vacation, I would be testing you right now." anyone else with neck/shoulder issues, chronic back of the neck pain or brisk reflexes? My CPK is supposed to come back tomorrow and god forbid its high I will lose my mind. I almost don't want to know before the trip. I need some words of encouragement guys. THanks