Quote:
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 ?
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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