My story

[Awah50]

Hi all. Here's my story. Please let me know what you think. Thanks in advance.

I am 55 female. Started having finger, hand, and toe cramping at least 17 years ago. I also had body wide twitching. Was worried cuz I was due to have a kidney transplant surgery with general anesthesia and was worried about having some neurological thing that would make anesthesia risky.

Saw a neuro. Don't quite remember what happened at that exam other than he thought it might be a mitochondrial disorder. He said to get a sample of muscle for biopsy since I was going to be having surgery anyway. I declined cuz I had too much on my plate. He deemed it to be safe for me to have the anesthesia.

Post transplant, I can't quite remember what happened with the twitching, but severe foot cramping continued. May have had some intermittent twitching, but stopped paying attention. Cramping has been going on ever since. Stopped worrying about it, focused on new kidney. Also in past 5-10 years, had abdominal muscle and calf muscle cramp and freeze up for a bit after voluntary contraction of them.It was kind of like once contracted, they didn't relax properly. I ignored it.

The 16 years since transplant have been relatively normal other than off and on cramping and needing more sleep than I used to. Kidney function has been good.

Fast forward to now. Had flu shot November. 8 hours later, fever, all over body aches, etc. Went away after a day or so. Shortly after though, body wide muscle/joint/bone aches returned along with twitching all over...jumping around. The aches and twitching continue til this day. Foot cramps still happen as they have for 17 years.

I also have new symptoms of twitching on outside and inside of ear (which sounds like clicks when it is against the pillow), a general, intermittent jittery feeling all over, along with a bubbly (twitchy, but not visible) feeling throughout leg, and finger(s) that involuntarily move when hands are extended. Seems more like maybe twitching than a tremor. My sleep,is interrupted with feeling of racing heart (but normal pulse), and just feeling achy and weird.

Also,I have a neurologist because of cervical spinal stenosis. I was evaluated and diagnosed with this about 10 years ago cuz of tingling and numbness. About 1.5 years ago (before flu shot), I returned to neuro cuz of neck and shoulder pain which was deemed due to progression of cervical spinal stenosis (as confirmed by MRI). She mentioned at that visit,that I was hyperreflexic and had some clonus at ankle. Normal Babinski. Deep tendon at knees were crazy brisk.

Now, those findings, combined with twitching and all of this pain have me terrified of ALS. I wouldn't be surprised.

Again, thanks to whomever reads and responds to this. Apologies for lengthy details. I am a complicated gal.

Best wishes for peace and comfort to all

 

[lgelb]

Nothing you have said sounds like ALS. If the hyperreflexia from a couple of years back were a UMN sign of P/ALS, there would be some other sign(s) by now.

It is not that unusual for injections to trigger or exacerbate weird sensations and even pain. It generally passes with time. Were you ever evaluated for complex regional pain syndrome since the transplant?

Is there a treatment plan for the progressing stenosis?

Everything you have described seems much more treatable than ALS. Even if we can't put a name to everything, and not everything need be related, if you shift your focus to what makes you feel better, that may prove more productive. I would ask your neuro about a physiatry (physical medicine & rehabilitation) consult.

Best,
Laurie

 

[Awah50]

Thank you Laurie. I'll be back with updates