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 ?