Please help, trying to get diagnosis

OK I will explain my story.

Am hoping you can help as I want to investigate Ms to rule out a crazy condition I have developed lately, which is Trigeminal Neuralgia. I started getting a dull ache in my tooth about a year back, and it progressed to full blown headaches and dull aching pain to the point where I can’t function. The condition is labelled suicide headaches.
At first I thought it was a tooth issue. Since then, my tooth has been removed and pain has persisted.
Am taking a nerve blocker, Carbamazepine and the side effects render me unable to work.
On top of this, I was diagnosed with Fibromyalgia 2 years ago. My Fibro symptoms are almost identical to that of MS.
MRI of my brain has come back normal, with no lesions. No one’s pushed to get a lumbar puncture done, and I don’t know what other tests to get done to try and rule it out completely as I have heard in my Trigeminal Neuralgia community it might not show up on a MRI but possibly lumbar puncture.
Considering all this, how would you approach your doctor and what would you get done to completely rule MS out? I don’t want to sound like a doctor Google but i need answers and just feel it’s more than just a coincidence.

Well, you can’t really rule out MS. What they do is rule out everything else and then pick MS. I’m not that knowledgeable about Fibro, but I don’t remember hearing about it involving TN.

Given the fact that this is an ongoing problem, and you lost a tooth for no good reason, I’d just contact the neuro and tell him pointblank that you’d like a lumbar puncture. Clear MRI’s don’t really mean anything, although they do need to find lesions there or in the spine to make an MS diagnosis.

Hi Neetz, welcome to the forum

I went through a similar situation, only I lost six teeth before they looked for TN.

I was diagnosed with MS nearly thirty years later and told I’d probably had the condition for over thirty years. In the meantime I’d had Optic Neuritis a couple of times, several attacks of Vertigo and a lot of neuropathic pain. My diagnosis finally came when I had a completely dead leg. I have no idea if the TN played a part in the diagnosis as an MRI found dozens of lesions (multiple lesions) and that was the basis of it.

The only way to know is by seeing a neurologist, no-one else can tell you. There is a diagnostic criteria which has to be satisfied, and then a long list of things to be ruled out; it is a very slow process.

I have met others with similar tales, several were diagnosed late in life and told, like me, that they’d had it for decades; relapsing MS can be in remission for many years at a time, thank goodness.

The first thing to do is discuss your suspicions with a GP, or, of course, you could always see a neuro privately - at a price.

I’m sorry my reply couldn’t be more positive, I’m certainly not a medic.

Ben

Hi TN can be a stand alone problem. i HAVE had a few in the states with this horrible condition who never had MS or fibro.

I know one had a new procedure which cured it. so far no more TN.

I have only had it once and boy I really feel for you if you get it a lot.

As to MRI you need a spinal MRI. A lot of people with MS dont have lesions on the brain. LP is a last resort for ruling out MS.

Fibro is poorly understood. You can get TN with fibro. Fibromyalgia and Neuralgia Often Go Hand-in-Hand - Upper Cervical Awareness.

Normally if you have MS it doesnt just present with TN although that can be the start of it.

I would think if it was me and i was suffering TN i would want a solution to that first without being on a drug that renders me almost unconcious all the time. Then see how it goes from there. If it is MS its usually a long haul for diagnosis. My first thing wouold be to get the TN under control so you can try to get back to some normalcy. xxx

I will push for my doctor to send a referral tomorrow. I forgot to mention I also get chronic UTI’s so will mention that too.

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