So what's left?

Well today i had my NCS & EMG, and as expected they are normal, so where does that leave me?

After my original post, this >>>>>>>>>>>>

2 yrs ago i woke one morning to fond i had pins and needles in my feet. This went a day or so later and the returned a while after. I am a 33yr old male who plays football twice a week.

My fingers the began to do the same, a sort of frost bite feeling would also be present. The feelings began to come more regularly.

I was tested for diabetes feb11( negative), and left it until aug11(1yr after symptoms started) as I began to get extreme fatigue and burning thighs. This time i was tested for B12 deficiency(negative). Again i left it and thought maybe its me. By this time all of the said symptons were joined by tiredness, constipation, unable to urinate fully, blurred vision, a bout of “conjunctivitis”(6 wks long), paon in lower back and limbs, and intense itching like bugs under skin.

I finally went back to docs in march this yr as i could not take it anymore. A rash had also now appeared on my arms and lower thighs above knee. I was given amytriptalyn and referred to neurologist. I see her in june, and at this time she said i have nerve damage in my right arm and hand. I had blood tests and again all negative. Booked for last week.

This time i had no sensation down my left side(arm and legs) and she said i had deterioated considerably in the 3 months since she last see me. I could hardly stand at the time, unable to straighten out or do some of her physical test. Again i had more blood tests including HIV. Again negative.

I now have a EMG booked for 19th oct and am awaiting MRI and CT scan. My thighs are almost constantly burning, and i have reqular bouts of lower back pain, and burning in my feet. I have now been put on pregabilin 75mg twice daily. This take the edge off all of it.>>>>>>>>>>>>>>

With todays EMG, I have also had every blood test possible with no positives, multiple physical examinations, and many hospital appointments and still nothing. Im now awaiting MRI and CT.

I had my worst known episode to date 2 weekends ago. Double vision, tight chest (shallow breathing as my ribs felt they were going to pierce something, fatigue so that i couldnt move, loss of co-ordination, and the heaviest of legs for 4 days straight.

So where do i go from here? Its not getting any better, and the pregabilin is not touching it. As you can imagine, all i want now is a diagnosis of some form so that i can put my mind at ease, no matter what it is.

Morning x Sorry you are going trhough all this - it’s flippin scary isn’t it!

All I can advise is keep going to your GP and discuss your meds with him/her - keep up with your diary of symptoms & how long they last and hope that the MRI’s come soon and maybe thay will provide some answers xxxxjenxxxx

Evoked potentials are often normal in MS (and in other neuro conditions) so just think of the results as another piece of the puzzle the neuro has to solve. Hopefully it will all be clear once all the results are in. Until then, try not to worry about it. The max dose of pregabalin is 600mg a day. If you are under that, then speak to your GP about increasing it. If you are already at it, then speak to your GP about adding something (eg amitriptyline) or switching to an alternative (eg gabapentin). There are a lot of options, so don’t suffer in silence. Karen x