FAQ/Help |
Calendar |
Search |
Today's Posts |
09-02-2020, 04:49 PM | #21 | ||
|
|||
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 | #22 | ||
|
|||
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 | #23 | ||
|
|||
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: |
09-08-2020, 02:55 AM | #24 | ||
|
|||
New Member
|
Hi LeedsLad,
I have somewhat a similar story to yours. My issues also started a couple of months after a viral infection. Sensory changes in both feet, and in legs. Twitching in legs and all-over. Some stiffness in calves. Done a bunch of tests including MRI, Spinal tap, nerve conduction and nothing is found except the twitches that was noticed on the EMG. ** Br John Last edited by Chemar; 09-08-2020 at 10:36 AM. Reason: ** NT guidelines |
||
Reply With Quote |
09-08-2020, 11:34 AM | #25 | ||
|
|||
Junior Member
|
Quote:
Hopefully it's a similar prognosis to what mine is then. I do find month-by-month, the symptoms get less and less and especially the last week for me I have found have been a lot of good days. I still get the odd prickly feeling/sensations/twitching, but it's much reduced. I've said that now, so I am sure next week will be horrible This is all without Gabapentin too. It's pretty much approx 7-months since this all started and my neuro did say it could take some time to fully resolve/peter out and did mention things like post viral fatigue which can sometimes take a long time to get over, if at all. When the report from our last session is available, happy to post it up in here. |
||
Reply With Quote |
09-08-2020, 11:42 AM | #26 | ||
|
|||
Junior Member
|
Another thing I forgot to add:
I was trying to show off my new found knowledge on all things nerve-related to the Dr and asked him whether peripheral nerves can regenerate (knowing they can lol) and he said 'slowly' but in your case, I don't believe there is any nerve damage. It is more a functional issue as opposed to a structural issue. Does anyone know if there have been similar prognosis' on here for people as most threads I tend to read are all around actual nerve damage as opposed to what this seems to be? |
||
Reply With Quote |
09-08-2020, 12:14 PM | #27 | ||
|
|||
Junior Member
|
The antibody tests BTW were: voltage gated potassium channel antibodies
(VGKC, LGI1 nad CASPR2). |
||
Reply With Quote |
09-08-2020, 08:08 PM | #28 | ||
|
|||
Junior Member
|
Quote:
|
||
Reply With Quote |
"Thanks for this!" says: | Atticus (09-10-2020) |
09-09-2020, 06:54 AM | #29 | ||
|
|||
Junior Member
|
Quote:
It does get better though and mediums like this really help. I'd encourage you to read some of the positive stories on here as it really helped me. |
||
Reply With Quote |
"Thanks for this!" says: | Atticus (09-10-2020) |
09-10-2020, 09:54 AM | #30 | ||
|
|||
Junior Member
|
As promised, Neuro letter follow up:
Further to my letter of 5th August, I had a telephone and Zoom consultation with Mr [BEEP] – he presents with symptoms which came on after a chest infection. This seemed to involve the sural nerve territory but also the small fibres. 1. Detailed neurophysiological studies looking for abnormalities of large fibres but also small fibre by Professor Martin Koltzenburg were normal. 2. Blood tests that were done which were normal or negative included LGI1 and CASPR2 antibodies as he complained of fasciculations, although he has no cramp. The calcium was normal, phosphate a little reduced at 0.86, magnesium normal, thyroid function normal, vitamin D levels normal. The symptoms he complains of are that of intermittent itchiness, tingling sensation, hot and cold patches which are intermittent and can occur all over his body. He also has twitching in the arms, forearms, eyelids and knees. The working diagnosis here is that of a post-infectious neuropathic syndrome which seems to affect small fibres and to a lesser extent large fibres. These are functional abnormalities as structurally the nerves are normal, neurophysiologically. My impression is this is a monophasic type illness and should resolve with time. At the present time I see no indication for a skin biopsy. We discussed treatment options and I certainly do not think he warrants treatment with intravenous immunoglobulin or corticosteroids. However, he is bothered by the symptoms and therefore I would recommend a trial of Gabapentin, starting at 100mg in the evening for 3 days, then going up to 100mg BD for 3 days and then 100mg three times a day. The dose can be gradually titrated up to 600mg three times a day. I have discussed the side effects of tiredness and perhaps weight gain. On the whole, however, this drug is well tolerated. If that fails, he could consider trying Pregabalin starting at 25mg at night, increasing after 3 days to 25mg BD, then 25mg in the morning 50mg in the evening for 3 days, then 50mg BD, gradually titrating the dose up to 300mg BD. I would therefore be grateful if you would give him a trial of these symptomatic treatments. He will get in touch with me if he feels he requires a further appointment or any further advice, I shall be happy to review him. Kind regards and best wishe |
||
Reply With Quote |
"Thanks for this!" says: | Atticus (09-10-2020) |
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 |