Originally Posted by MariaMaria

Hi there,

I read your story with great interest, I have also been debating whether to post my story on here.
I could do with some support but I’m worried about what I may hear and nervous about posting.

I haven’t actually come across anyone with symptoms so similar to mine until I read your story.
I was beginning to feel like I must be the only one.
My symptoms are strange and varying, parasthesias all over my body, many like you have described, of varying duration and intensity that come in flares. No allodynia or burning either. Much more severe in the first couple of months.
Mine are always much more pronounced on my left side, with not as much on the right.

I too go through phases where I feel I am improving and have days with hardly any symptoms only to go back again. It’s soul destroying to say the least.

My reason for my problem is completely different to yours though and I’m still trying to get to the bottom of it. I believe it is due to the medication I was taking. I have also had issues with my feet (problems began with pins and needles in toes) which have slowly been improving (no motor issues or numbness) but has impacted my activity.
The first neurologist said it is fibromyalgia, I don’t have any other symptoms of Fibromyalgia though, I have no myalgia or fatigue.
He advised a NCS to rule out long fibre neuropathy although he strongly believed I don’t have it. .

He said that if I had a reaction from the antibiotics then it must have triggered something functional because he doesn’t believe my symptoms are long or small fibre damage. He said they wouldn’t be so transient if it was damage.
I’m getting a second opinion from a specialist in London next week... perhaps the same one as you.

I was wondering how you found the nerve conduction study... did you find it made your symptoms flare up or not?

I’m really scared to have the test because I’ve read that other people found they were worse after (yes I too frequently go down that road of desperate googling causing more pain than gain generally) i should stop but every time I find myself in a bad flare of awful parasthesias again I feel compelled to resume my search for answers only to end up feeling more anxious.

The Dr that carries out the test was honest and told me he couldn’t say whether it may or may not.

I’m 5 months in now and I’m really tired of it and quite scared , it’s like the merry go round from hell.

How are you at the moment ?

Originally Posted by LeedsLad84

Hey there

I left you a visitor message.

I am pretty much the same at the moment. I’ve had three days of very mild symptoms (2/10) but not counting any chickens as I know it’s still there as I get sporadic tingling or twitching.

My neuro suspected this was post viral but as I said in the original post, I took two courses of different antibiotics which like yours could have triggered something. It is idiopathic really as they’ll never be able to say what the cause was.

My neuro said exactly the same re it not being damage as symptoms were too transient and all over. He said it’s a functional issue affecting mainly small fibres but also some large (twitching). I also had the thermal test for small fibre which was negative so he didn’t see any reason to do a biopsy.

I took gabapentin for two months and stopped a week ago and it has made little difference to symptoms which is good in a way as I’m glad they didn’t seem to be masking anything.

It’s going to be ten months for me soon and it had definitely got more tolerable, and I’m sure there’s an element of me becoming slightly used to it. Touch wood, it doesn’t take over my life like it used to in the first six months. Then, I’d struggle to eat, sleep or even focus on anything else. I’m quite a skeptic, but I do believe positivity and trying to block out the noise from this does help. I just went on holiday recently and aside from one two hour spell, it didn’t affect me at all.

I hold onto the hope from my last neuros letter that he expects it to resolve and there isn’t structural damage to the nerves. Let’s see! Happy to discuss further with you in any case as sometimes I know it can be difficult to get support when people don’t understand what’s happening. My girlfriend is sick to the back teeth of neuropathy and nerve health lol.

Also don’t fret about the tests. They are on a scale of 1-10 about a 1. They don’t exacerbate symptoms nor does it hurt. I had some mild aching after the first EMG and took some ibuprofen but that was it. The second time round I was actually looking forward to it to see whether anything had changed. I’m terrible with needles and all that stuff too so if I can do it you’ll be fine

Thé neuro you’re seeing is excellent. The one I sought a second opinion from was Dr Hadi Manji, who to be honest told me what the first one had, albeit it in a lot more detail.

Hope this helps a little

Originally Posted by echoes long ago

i have had eight electromyography / nerve conduction studies over the years. while i wont say that i would do it for fun, it really was not bad at all ever and i never had any lingering or new effects from having the testing done.

Originally Posted by MariaMaria

Thanks a lot,

I must have missed your Dr in my search and I thought I had searched well.
My appt is tomorrow, hopefully it goes well and allays my fears a little.

I know what you mean about your girlfriend being fed up with hearing all things nerve related, my partner must feel exactly the same,
Its been non stop the last 5 months for him listening to me! and living with my distress so it would be helpful to speak with someone who’s experienced it too.
I got your visitor message too thanks, it would be good to do that.

I completely get what you’re saying regarding positivity and distractions, I’ve noticed this myself at times. It’s great that you had a relatively undisturbed holiday, gives me some hope that I can achieve the same when the time comes.
It certainly doesn’t help at all when you let it consume you as I have and still do at times when it is bad. Hopefully with time I too will become more habituated to it and be able to block it out to a certain extent.
I’m sure it will help when life in general can also return to normal for all of us.

I just hope I haven’t got the damage that I worry I have got and that this is functional like I’ve been told so far.

Im feeling better about the tests too hearing this, a couple of other people have also mentioned that they found them completely fine both during and after which is reassuring.

Good that your symptoms are down the lower end.
I rate my symptoms the same way as you do and have been having an improved week overall after having a pretty terrible one before that, to the point where I was considering going back on the gabapentin.
I just leave it by my bed as a reminder I have a last resort to turn to if I ever feel bad enough and feel the need to try it again.
I didn’t notice much difference either when I took it previously but I wasn’t on it for very long.

I’m around 2 or 3 on my scale at the moment.

We can only hope it continues!

Originally Posted by LeedsLad84

Hey Maria- how did you get on??

Originally Posted by LeedsLad84

Hey everyone

Hope you're all doing well.

I've had a few PMs and thought it would just be good to update on what's been happening.

In a few days it will nearly be the year anniversary (not a bloody good one ) of this thing, and things have definitely calmed down.

Whether the issue for me was structural or functional is not known, but not that significant in my case. Personally, I think there was some massive inflammation following a bad virus last year and it's taking time.

Recovery has been slow and very rocky, but it's at a point now where most days are a 0-2 out of 10, and the flare ups are generally limited to hours rather than an an entire day. It is by no means taking over my life like it was back in the early days, and more of a background nuisance now. I do feel eventually it is going to fizzle out and I think I am 80-90% of the way there.

I had a small flare up yesterday, and that was the first one I had got since January 9th, which is really encouraging. The gaps are getting longer now with any bad symptoms, whereas before I used to have them every other day or once every 3-4 days.

On most days I do notice it's still there and get very mild tingling/twitching/spasms, but not enough to bother me. The flare ups consistent of these symptoms being heighted as well as very transient prickling which generally lasts a second or two and can be anywhere, but mainly in the hands/feet.

I've been religiously tracking everything and have never really found a link between diet and symptoms. The only things which seem to exacerbate my symptoms slightly are cold and lack of sleep.

I'll update again in another 2-3 months but I am happy with the progress and so is my neuro.

Happy to answer any questions if anyone has any!

Originally Posted by Blueboat

Do you ever think your 'bad flu' at the start of your issue was covid19?

I spoke to you a few months ago and still having a few issues myself. Scans and tests all came back clear (only had low folate and recently had slightly elevated IgA, but not concerning neuro). I'm almost learning to live with it.