For the last few months I've been having a horrible burning sensation intermittently over my body.  Just before Christmas it got really bad so I visited my gp and she gave me some Gabapentin, 300mg, three times a day.  She did tell me though that if my symptoms did improve it did mean that it was likely the pain was being caused by some kind of nerve damage.  Since taking them the pain has been loads better.  So now I'm not sure if this is good thing or not.  The cramping/squeezing in my muscles has been better as well.

I've got a lumbar puncture next Wednesday.  Not looking forward to it but I've had a gastroscopy in the past and nothing can be worse than that!!  When I saw the neurologist at the beginning of November he told me that I have an abnormal MRI scan with over 30 high signal lesions in the white matter but the lesions were not typical of MS.  The lesions were mostly in the frontal part of my brain. My evoked potentials in the summer were normal.

The unknown is so frustrating!!  I just wish I knew one way or another.



Hi Lynne

Try not to worry about your lumbar puncture. I had a really positive experience when I had mine and it was a breeze. Just a sharp scratch for the local anaesthetic and then some pressure from the needle - no mega-headache afterwards either!

Take it day-by-day and try not to worry between appointments - stress won’t help how you feel. We all understand how that waiting feels but probably did not take our own advice, but try your best.

Things will get easier, hang in there!

Teresa xx

Hi Lynne

Ditto to what Teresa has said in her reply! My experience with the LP was fine too. I didn't find it painful at all - more uncomfortable if anything. Afterwards it's a good idea to drink lots of caffeinated drinks like coke or coffee (as well as water) to replace the fluids lost during the process of the lp itself. The caffeine helps to avoid the headache from hell too. And rest after the LP too - that's important.

Stress is one of those pesky things that makes us feel worse so try not to worry - difficult as that is to do - and relax as much as you can. Worrying won't bring the answer to you any quicker and it won't change anything either - but all that said we all know what it's like too scared2

Good luck and fingers crossed that the lp brings you closer to finding out what's going on.

Debbie xx

I had a pretty horrible experience with my LP, but it was a long time ago and the guy who did it was new. I gather that they've improved the technique since then and most people seem to find them pretty painless and straightforward these days. I hope yours is too :-)


Glad the gabapentin is working for you. Such a relief, isn't it?!


Karen x

Thanks everyone for the reassurance.  I'm not really worried about the local anaesthetic, I've had them before.  I had a car crash about 7 years ago and had to have 15 stitches in my eyelid, so needles don't bother me too much.  At least with it all happening in my back, I won't be able to see what's going on or how big the needles are!  It's just the fear of the unknown I guess, normally things are never as bad as we think they are going to be.  I'm not sure who does the lumbar puncture though, the consultant? 

I do feel better on the gabapentin, I've no side effects at all.  I know it's working because with Christmas my medication timing has sometimes been a bit off and the burning, muscles pains and stiffness have come back in between doses.  I've got to be at the hospital at 2pm on Wednesday and I hope I don't have to wait too long.  I've told work not to expect me in the rest of the week so that gives me 5 days to rest up.  I don't know when I'll get the results, my next appointment isn't until the end of April even though the consultant said he would see me again at the beginning of March, pressure on appointments I guess.  I'll have to ask on Wednesday, I don't fancy having to wait for over 4 months to find out.

Lynne x

Well, turned up for the lumbar puncture after a 35 mile car trip and my husband using a days leave only to be told that the doctor who was going to perform it doesn't actually start her job until tomorrow!!  The nurse couldn't apologise enough.  So now it maybe next week or the week after. 

Just another delay again.  No wonder it takes so long to get a diagnosis!  After all the stress and worry I'm going to have to go through it all again.  Even though I work for the NHS, Musgrove Park Hospital, your organisation skills are nil.