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Old 09-02-2020, 04:49 PM #21
Blueboat Blueboat is offline
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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.
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Old 09-03-2020, 10:19 AM #22
LeedsLad84 LeedsLad84 is offline
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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!
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Old 09-04-2020, 05:18 AM #23
LeedsLad84 LeedsLad84 is offline
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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!
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Old 09-08-2020, 02:55 AM #24
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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
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Old 09-08-2020, 11:34 AM #25
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Quote:
Originally Posted by Johnne View Post
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
Hi there

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.
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Old 09-08-2020, 11:42 AM #26
LeedsLad84 LeedsLad84 is offline
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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?
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Old 09-08-2020, 12:14 PM #27
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The antibody tests BTW were: voltage gated potassium channel antibodies
(VGKC, LGI1 nad CASPR2).
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Old 09-08-2020, 08:08 PM #28
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Quote:
Originally Posted by LeedsLad84 View Post
Hey everyone! Long time lurker and I have read a lot of threads here in the past few weeks. I've been debating or not whether to post my story, mainly through fear of hearing things I wouldn't want to, but have decided to do it and hopefully can get some support/help from this great community.

I will try to give enough information without boring you guys to sleep firstly So, quick introduction, I am a 35 year old male living in London (just outside in Hertfordshire for people that know it) with no underlying health conditions, generally in very good shape, and my story started on approx January 31, 2020.

Prior to this for background, in late December to mid-January, I'd had a very bad infection/virus which wiped me out (respiratory but was like the worse version of flu ever!). During that time, I was prescribed courses of Doxycycline (first course. 1 a day for 7 days) and Clarithromycin (2 a day for 7 days and my stomach hated these). Incidentally, during that time I had also started taking high doses of Vitamin B12 (1000ug/day) and Vitamin D (8,000IU/day) which I later STOPPED after reading things online about toxicity.

Fast forward to February 10 when the virus has gone, but I know wake up with the outer border of my right foot feeling very weird. I'd say altered sensation rather than numb because I could still feel it, but it was very disconcerting and I believe the term used is Dysesthesia.

About a week later (February 10), the 'fun' starts. My left calf suddenly feels cold (not to the touch) and there are pins and needles/skin crawling sensations which wake me up one evening, and from then it comes on pretty rapidly....

I experience a range of sensory symptoms throughout the body, ranging from: prickling, feeling like there's electricity/static in my body which is making the hairs on my body stand up, finger tips feeling altered sensation like cold, numb or sandpaper, visible spasms/twitching, feeling spots of warmth and wetness on parts of the body, and lots of other things. All fairly transient and for the most part, not localised. From February to April I'd say it was at it's worse, probably a 5-6/10 and me feeling very uncomfortable (rather than in 'pain') and it was a very dark time for me. I'd convinced myself I'd got MS and had read every article known to man on Google which is generally full of doom and gloom. I should have known better. I am sure my anxiety and mild panic attacks exasperated things and made the symptoms worse during that time, but I did see a Neuro in any case in March.

He did the standard strength/reflexes/sensation tests and ordered an MRI of the Brain/Spine (with contrast dye), EMG/NCS and at the same time I got bloods done by my GP (basic tests). Nothing remarkable was shown from any of the tests aside from raised B12 (the stupid supplement) at 1187 ng/L and raised serum free T4 level at 23.4 pmol/L. The Neuro didn't suspect nerve damage or anything sinister and said he expected it to clear up and that some viruses can cause peripheral neuritis. He did not think it was small fibre neuropathy, but I can't recall his reasoning.

I went on my way and while things had definitely settled a bit in April, including my right foot regaining all normal sensation, but thing was was definitely still there. There were days, maybe even up to a week, where I thought this nearly gone and I would be really happy, but then it would appear with avengence with a big flare up and this cycle just kept repeating itself and my anxiety about it all would come flooding back. I went back to the Neuro who suggested 10MG of Amitriptyline for 8 weeks to 'settle down' the sensory nervous system, but it really did nothing apart from help me sleep better, so I stopped that in June.

I went back to him again recently as this cycle has continued and he suggested the only thing he could do was to look at medical treatments such as perhaps pregabalin or gabapentin tablets at low dose as there was no clear neurological explanation, which I haven't taken him up on. He also said something along the lines of people don't always feel normal and it's nothing sinister, so I did feel a little fobbed off to be honest and it does seem like a common theme from everything I've read than consultants can perhaps be somewhat dismissive of our symptoms.

Decided to do a bit of research and find someone in London that specialises in peripheral neuropathy to get a second opinion, and I saw him last week and described my story. I immediately felt much better with this Dr and he mentioned it sounded like a post viral neuropathy (even said it could have been COVID) and that it could be non-length dependent small fibre neuropathy based on my described symptoms and he ordered a repeat of the EMG/NCS and some further blood tests (Vit D, biochemical profile and antibodies). I had the electrical tests last Monday, along with quantitative sensory testing. Everything was normal according to the consultant. The only thing he flagged with caveat was that with the thermal threshold testing for my right hand, it was borderline but he believed that was more to do with the temperature on the day and I tend to agree. It was 36 degrees in London and I was in a room with no air conditioning and my hands were very clammy/sweaty (TMI sorry). I haven't heard anything re. the bloods yet but I will hear back from him hopefully in the next week or so about next steps!

So I guess here we are at present day. This condition continues to be like the stock market, up and down! Some days are absolutely fine (1-2/10) where I don't notice much at all and other days it can flare up and be really uncomfortable, especially when the pins and needles or static/electric feelings hit as they can be anywhere, and I mean anywhere! Some days I will just get some mild twitching, and then other days recently I've had altered sensation in some of my finger tips, gritty feeling in the toes, cold freezing/burning sensation in my heel. They can be there for most of the day or just come and go. Nothing ever seems to be constant, one day I'll have warm feet, the next day fine, the day after slight freezing/burning in the toes, etc. All sensory.

It's affected my mental state quite a bit. It's been approx 6 months now and I think my fiance is on the verge of changing her mind if I keep going on about this. I have all the common concerns that I have read form a lot of you lovely folk on here: will it go? Is it going to get worse? Why has it happened to me so young? How will it affect me raising a family etc. etc. I've read some real distressing stories on here, but also read some very uplifting things. Either way, I have promised myself however this goes, I will not just disappear from the site if things get better, I will let you guys know as I know how much the 'good stories' have really picked me up on bad days.

The only last thing to note is I am taking some supplements per day, but I don't think they are doing much to be perfectly honest, although I think the twitching has slightly reduced: 1 Vitabiotics Wellman Original, 1x1000mg Omega 3 (High Strength) and 1x250mg Magnesium tablet. I've also got back into going to the gym- my strength etc. is all still there and I can lift fairly heavy, but I do sometimes get flare ups a day or 2 after a workout which I have read is fairly common.

So there it is, I hope you're still with me and haven't fallen asleep! I appreciate you reading this, and would welcome any thoughts/advice from anyone. I will continue to update this thread as I go if people are interested, but the main thing I am clinging onto is that peripheral nerves CAN heal and I have seen signs of improvement rather than deterioration so maybe one day this will be a distant memory. Here's hoping!
Thank you for sharing your story! I feel the same way like nobody will listen after the first few times. My family is already tired of hearing about my neuropathy i understand completely. I'm having so much anxiety about it and its affecting my life so much.
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Old 09-09-2020, 06:54 AM #29
LeedsLad84 LeedsLad84 is offline
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Quote:
Originally Posted by Ds293 View Post
Thank you for sharing your story! I feel the same way like nobody will listen after the first few times. My family is already tired of hearing about my neuropathy i understand completely. I'm having so much anxiety about it and its affecting my life so much.
Hey, to be honest I was at that stage and the initial 2-3 months I feel like were some of the worst of my life. From thinking whether I could live a good life like this to what my future would look like, etc. It was really dark.

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.
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Old 09-10-2020, 09:54 AM #30
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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
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