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 ?

Hey Maria

I’ll respond properly to this tomorrow. Feel free to PM me too, always happy to have a chat. Which neurologist are you seeing?

Take care of yourself

Hi,

I looked to see if I could send you a private message to discuss but there was no facility to do so, when I enquired I was told I couldn’t do so until I had posted more.
Not sure if you’re able to message me at all ? then I could reply to you.
I’m seeing Dr Radunovic.

Look forward to hearing from you.

Hey MariaMaria,

Good morning.

After consulting my paperwork I had "Nerve Conduction Studies 24 June 2020." at Norfolk and Norwich University Hospital. It was, I remember, a beautiful day. The doctor was extraordinarily grumpy. The tests themselves seemed hilariously antiquated. He used some coloured wires that reminded me of childhood Scalextric and an old Tailor's tape measure that he used to measure the distance between my ankle and knee etc. I actually enjoyed the tests. There was no discomfort at all. Zero. I had to really stop myself laughing at times at the bedside manner of this doctor.

"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"


After the tests I drove to the golf course and thrashed everyone. I recorded my best round of the year.

There is nothing to worry about regarding the tests. You have to prepare yourself for the staff being covered in PPE and hygiene measures etc. But that is all.

The tests themselves are harmless. They cannot make your symptoms worse. There is no physical means by which they can.

Let us know how you get on.

Atty

Hi,

Thanks for your reply.
That does sound really old fashioned! I’m glad that the grumpy doctor didn’t put you off and you managed to enjoy the test.

It’s good to hear that you were completely fine afterwards and that does make me feel better so thank you.

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.

That’s reassuring, thanks

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!

Hey

Yeah just stick in there. I’m having an off day today but the previous four were really minor so small mercies and all that. Feel free to email me if you went to talk further, and let us know how your appointment tomorrow goes. I’m intrigued about his thoughts as we seem to have a very similar ailment!