Quote:
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 |
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!