Hi, Nikki,
Thank you for the response and I apologize that it’s long overdue. I don’t trust this Nuero and the EMG results. He only tested about 4 muscles and never had me flex. So why does it show 14 here? He did tell me I don’t have ALS, but he is not a specialist, he’s a vascular nuero. I have an appointment with Dent Neurology (Buffalo, NY) in mid October with a neuromuscular specialist. I’m sure she will want to redue the EMG.
The first appointment this nuero said my arm was weak, then he said it was OK when I had the EMG, so I’m confused. The Nuero PA also said no weakness and so did my rheumatologist. I did not go in there reporting weakness like he wrote, I complained of nerve pain and thought I had Parkinson’s or ALS. He said no on both.
This all started in January 2021. My initial symptoms were burning nerve pain down my arms to my hands. I thought I was having a heart attack. Now I have twitching in my left arm and occasionally in my legs. I get electric shock feelings in my legs and sometimes torso. Some days are worse than others. Very quick jolt as if I’d gotten stung. My legs have knee and thigh pain and feel stiff with pins and needles. They will also vibrate/buzz and that comes and goes. Doesn’t hurt but makes me anxious like I want to jump out of my skin.
Right now my arms are burning and my feet are buzzing.
I do have osteoarthritis in neck and back, and severe cervical stenosis and was told by a neurosurgeon that I need triple fusion, however the neurologist doesn’t agree. I am holding off on surgery.
I have fatigue and get winded especially when in a lot of pain. This is frustrating as I was always so active, however I find I can do more than I give myself credit for. In general, I feel sick everyday.
I am having trouble swallowing. Pills, food, and liquids are no problem, but it feels like it doesn’t finish the swallow when it’s just salvia. The spine surgeon asked me if I was having swallowing problems before I was and he was surprised I wasn’t. The nuero said my voice is fine so not to worry about ALS.
I get these brief “tickles” in my face, and if I touch the spot it goes away, very strange!
I am very depressed and anxious! I am having problems sleeping, getting up every 2-3 hours but can go back to sleep with melatonin. Have a horrible time getting out of bed in the mornings, but pain gets better when moving.
My hair is falling out (stress?) and my right eye droops sometimes. I feel like I’ve aged 10 years in 8 months! MG, LEMS, and autoimmune have been ruled out.
Doctors have given me Prozac, Lyrica, Lexapro, Cymbalta, and Gabapentin. I had bad side effects with all except the last. ERs gave me Hydrocodone and that helped the pain. The Gabapentin helps with pain and anxiety but I only take it as needed and I know that’s not correct, but it works. I’m afraid of addiction. I drink too and that helps!
I read the sticky about 50 times! I have no failures and can do everything I normally to do.
In rereading this, wow, I’m a mess! We lost a great friend 3 years ago to ALS and even had the funeral dinner at our house. I also know of someone who was recently diagnosed by the same doctor that I’m going to at Dent which is too close for comfort. Doesn’t seem that rare and it’s always on my mind! For example, we went to see Brit Floyd (Pink Floyd cover) and I planned my funeral music the whole time. I pray every night for one of two things – wake up healed or take me in my sleep. Does this sound like ALS?
Thank you!
Lynne