FAQ/Help |
Calendar |
Search |
Today's Posts |
|
09-01-2020, 08:49 AM | #1 | ||
|
|||
Junior Member
|
Can relate to this exactly with my experience, however not following an illness. 35 here also and up in Glasgow.
Only thing found with me was low folate which has been corrected. Spinal MRI clear. Had many neurological symptoms, which have come and went. Tethering over what it could be. I've went through the lot from stress to MS, to peripheral neuropathy caused by folate deficiency. Still no idea. Going through NHS at the minute with neurologist, but painfully slow (pun intended). Frustrating thing is I have private healthcare now through a job promotion and can't use. I am also going through a supplement programme shortly, and will update as to how this goes. Main ones being R-ALA, omega fish oil, magnesium, acetyl l-carnitine and a host of B vitamins. Hope all is well with everyone in the meantime. |
||
Reply With Quote |
09-01-2020, 05:58 PM | #2 | ||
|
|||
Junior Member
|
Quote:
I have my appointment follow up with the new neuro on Friday. I am interested to see if anything was found in the blood work and his thoughts on my electric tests and temperature testing which were all normal. My symptoms are still all over the place. Transient and day to day can vary, but main things are still visible twitching/muscle contractions, prickling and sometimes also itching. Seems to be no pattern whatsoever I can pin point as to how the body will be from day to day. |
||
Reply With Quote |
09-02-2020, 04:49 PM | #3 | ||
|
|||
Junior Member
|
Yeah will do. A long process lies ahead no doubt.
No MRI of brain yet. Don't know what will be said in next consultation. Hope all goes well on Friday. |
||
Reply With Quote |
09-03-2020, 10:19 AM | #4 | ||
|
|||
Junior Member
|
Thanks!
Last few days have been weird. - altered sensation in one of my finger tips - nipping/prickly pain in random spots on my body lasting for only a second or so. Not happening often, but very uncomfortable when it does - more fasciculations, especially in one spot on my left side forearm. Very off putting and I notice a lot more at rest. Included a video for anyone interested: It is still definitely improved from the early months, but absolutely no sign off this going away right now. Will await tomorrow! |
||
Reply With Quote |
"Thanks for this!" says: | Atticus (09-06-2020) |
09-04-2020, 05:18 AM | #5 | ||
|
|||
Junior Member
|
Hi all
Had the follow up with my Neuro today. The electric tests (some of which were for small fibre too such as thermal testing) and blood tests all came back normal. He mentioned that it's clear I have some sort of post infectious issue and that he doesn't believe my nerves are damaged, but there is a functional abnormality/they are misbehaving at a molecular level, as opposed to being anything structurally wrong. Think he mentioned something about the brain becoming hypersensitive too and that's why my sensory and motor nerves (fasciculations) are firing off when they shouldn't. He considers my symptoms on the mild end of the scale (I do agree based on some of the stories I have read on here) and does believe it will eventually go back to normal, although couldn't guarantee that. He said what I have is on the same pathway as GBS, although not quite the same as I didn't have any paralysis nor needed a ventilator to breathe. I mentioned IvIG and his thoughts were that it was a little too 'heavy duty' for what I am experiencing at the moment, and it would be best to try a phased approach with first Gaba and then Pregaba before it could/should be considered. He mentioned there's patients he has using this but they have extreme small fibre neuropathy. He said a skin biopsy wouldn't change the course of treatment so he wouldn't advise that for now, and he also mentioned that generally small fibre damage symptoms are more consistent and include stabbing/burning which I don't have, and that my symptoms are very transient. He did acknowledge though some of what I have described is small fibre. So, I am going to try Gaba for a few months and report back to him and see where we go from there. He gave me a lot of his time and answered all the questions I had, so I am feeling more positive that this will eventually go! |
||
Reply With Quote |
"Thanks for this!" says: |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
25 year old male. very scared. | Peripheral Neuropathy | |||
Post Viral Neuropathy? Please help | Peripheral Neuropathy | |||
Post Viral Neuropathy? Please help | General Health Conditions & Rare Disorders | |||
SCARED car accident 8 months post op ACDF | Spinal Disorders & Back Pain | |||
4.5 months Post-HiCy : A TRUE Thanksgiving Story | Multiple Sclerosis |