Painful neuralgia, please help

Morning all,

I wonder if any of you suffer with occipital neuralgia.

i am not diagnosed with ms, it was mentioned initially by my neuro, but in the light of a clear MRI etc was dismissed and now I am told I have migraines. I asked why I have numb patches that have stayed for over 18 months and got some garbled theory about auras. I have never known a migraine aura to last that long. I have consistently had new patches appear with periods of being unwell. I November last year I started with my right hand and arm cramping, within a day my right hand went numb and a few days later the excruciating pain started in the hand that last weeks.

since then the feeling has never come back. I finally had some nerve tests done of the hand and it was found that I have nerve damage


Yesterday, I woke and noticed a couple of toes were numb but felt like someone was squeezing them, they are still doing that today, but last night about five I started with occipital neuralgia. I have had it in the past, but nowhere near as bad as that. I was nearly crying and passing out with the pain. I got home and took some meds for it, but even this morning it’s still there. My right hand and arm are burning, I am experiencing a lot of twitching all over and the tinnitus I have experienced in my right ear for weeks now is louder than normal.

I went to a different gp a few visits ago who felt that it could still be ms, but at the end of the day, clear MRI’s are proving otherwise.

i guess I am just trying to figure out what others on here think with hindsight and experience.

thanks for reading this


(((Hugs))) Clear MRIs definitely argue that whatever you’ve got isn’t MS, but migraine doesn’t seem to be an adequate explanation either - and you definitely need an explanation for the numbness.

How long ago was your last MRI done? And what other tests have you had? Have you got another appointment with your neuro? If you haven’t, contact his secretary and ask for one. If the neuro signed you off, ask your GP for another referral, perhaps to a different neuro?

I hope you get some answers soon.


Thanks for your reply,

my last MRI was in December last year, I am not due to see him again until February next year, last saw him in may and he wanted a six months follow up. Evidently, someone somewhere can’t add up and work out that should be November!?!

the pain has driven me to distraction all day. The thing is I feel that if I start pushing he is going to think I am some kind of hypochondriac, but with new symptoms showing all the time, even during the time I was taking the meds he told me to take, and now the physical evidence of nerve damage, part of me thinks, no, don’t let them fob you off, something has caused the nerve damage they have to find out what! I have so many numb patches all over, areas of burning, it can’t only be restricted to my hand.

I suppose I will wait and see what the gp suggests, I am expecting to get a call to come in amd see him when they get the letter saying I have neuropathy. Failing that, I might be forced to go private for an initial consultation, and see if I can get someone that is willing to look further than the end of their nose.

Again thanks for replying

sam x

While you are waiting, keep a symptom diary - when each symptom starts/changes/goes away, and any obvious triggers that you notice. This will help when you do eventually see a neuro and he asks how you’ve been.

When you see your GP, tell him that you’re in pain. Ordinary painkillers won’t help with nerve pain but there are painkillers that do and your GP can prescribe them.

I hope you get somewhere soon.