HI everyone,
I have already been diagnosed with trigeminal neuralgia about 6 years ago. I have also been having lots of problems with random sharp pains in my arms, legs, feet and hands. The pain is very similar to what I feel from my TN in my face. I also have a very annoying ringing in my ears that has been continuous for the last 6-7 months.

The pain in my legs, arms, etc seems to come out of nowhere, very sharp and lasts for anywhere from a few seconds to a few minutes. Some days I have no pain from it at all, other days I can have pains randomly throughout the day.

My doctor seems to think its either MS or fibro, he also thought it might be something else that I can't remember but he ruled it out with a blood test. I also have times where I feel slightly dizzy like I'm going to lose my balance.

Also, and I don't know if this is a symptom but it seems like my eye sight has gotten worse at a very fast rate. I never needed glasses until about the time the TN started and at first I only needed the lowest power reading glasses, now I've already moved up to much stronger glasses in a few short years.

I am open to any help and advice,

Jerry
AKA TNpain

Hi Jerry and Welcome to Neurotalk..

Well let's see what Dr. Sally says.. Your pain sounds more like Fibro than MS, but what do I know.

You talk about your eyesight worsening. Have you seen an Neuro/Optho to check for ON? ON can be a sx of MS, among other things.

Let your Neuro do his thing (testing for MS) and soon you may have answers.

I hope you don't have MS. TN is enough with which to deal.

Welcome Jerry, and sorry you are having these problems.

I have not been diagnosed with anything and don't actually have trigeminal neuralgia, but I have long had symptoms that I'm sure are related to the trigeminal nerve. (When I first saw a diagram of where the nerve runs into the face and teeth, it looked COMPLETELY familiar!! I KNEW those lines very well!!)

First thing I had was some lightning-sharp pains below both ears that lasted for days or a couple weeks in 1999 (infrequent but they really got my attention!).

Three or four months later I began having a ton of weird symptoms, including painless but distinctly electrical shocks around my eye that soon were extending into the side of my nose and upper lip. This still happens (on both sides). Plus lots of other facial stabs, paresthesias, and electrical sensations.

But I also get the random stabbing pains elsewhere in my body, sometimes of the same "electrical" or lightning-"toothache" quality.

One neuro all but told me I had MS at my first visit (though I also had other symptoms--widespread paresthesias, Lhermitte's, dizziness and minor coordination problems, sudden hearing loss, etc.). Later they said I don't have MS, though they can never rule it out absolutely. I still have no diagnosis whatsoever. It's possible I have some version of fibromyalgia but who knows.

I don't have the face and body shocks as frequently as I used to, but they're still there. In fact the painless face shocks nearly went away for a few months recently (after being almost daily for 8 years) and now, just within the last few days, they're back again!! like everything else comes back.

Nancy's Law: Everything goes away... and everything comes back!

Very best of luck in finding a cause for all your symptoms and problems.

Nancy T.

I've been trying, but I lost my job due to illness while the docs where trying different meds and were unable to find anything that worked. Now I have no income and no insurance and no doc will even look at me. I am trying to get help through the government but they say I am not disabled even though my regular family doctor says I am. I am seeing a lawyer tomorrow to fight my denial, but now of course the lawyer will get a large chunk of the money that I could really use to pay off my bills and possibly move to a more suitable climate. I am in Ohio and the winters are very bad for me, and the summers are very humid which is also bad for me. I feel like I am stuck in a vicious painful circle and now need to give much of what I would have got to an attorney to get me out of it.

Jerry

I'm sorry Jerry...Be strong...answers will come one way or another. Just wanted to welcome you here and offer you a hug If you hang around long enough, you'll find that there are others here in your shoes and you may get some great advice from those who have walked in your shoes. Take care.

Thanks greenjeans,

I'm seeing a SS attorney tomorrow. I filled out what seemed like three novels of paperwork for her and I have everything waiting at the door. The good thing (trying to see silver lining) is that I am in the middle of an attack so when I see the attorney I will be 100% miserable and in pain so she can see exactly how I feel. The pain is so bad my eyes tear up and she will get a front row seat to see what I am going through.

Jerry

Good luck with the attorney, Jerry. I hope you win your case.

I was dx'd with C spine issues and a syrinx ( a cust in the T spine) while testing for ms - still in limbo with that. My neuro also suggested fibro, but I don't think so.

I do not have tn that I know of - not dx'd with it - but I do have those stabbing pains like you describe, sometimes. Hard to say what that comes from in my case with all I have going on.

If my neuro had not been looking outside the box and MRI'd my entire spine, all I would know was there are lesions on my brain, and I'd never have known about the spine issues. And that happens too often with possible ms cases, IMHO.

I hope you win your case, get some ins, and get further testing so you know what's going on.

for now, I'm sure the limbo folks - and all the good people here - will try to help you out.

Good luck.