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Will I ever know…

For the last 10 years I have suffered with trigeminal neuralgia. Usually 1 attack per year. The last attack happened about 2 years ago and was the worst I have ever had. But what was more unusual was that for the first time it was on the left side not the right. Since then I have suffers with awful pain in my feet, vibrating buzzing feeling and numbness in feet, leg and hands. I also have vertigo which has been going on for years on and off. If I stand still and close my eyes I fall over! Fatigue is really bad and like nothing I can explain. Recently I have been having a burning sensation in both legs that feels like the worst case of sunburn! I was diagnosed as having foot drop 6 months ago. The latest thing is when I lay down at night I have crazy legs that jump about and muscles that feel like they have jumping beans in them! Sorry for this but have also had several episodes of vaginal numbness which thankful only seems to last a few minutes. My bladder control is awful but only when my legs are bad! My doctor is convinced I have MS but the neurologist she sent me too was not interested and said it must be fibromyalgia. Scan came back inconclusive but only on a 1.5t scanner. Please can anybody help I wonder if I will ever get a diagnosis, it’s really getting me down. Has anybody else had a similar experience??

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  • AllisonJo
    3 years ago

    Hi Peanut,

    You see this weird thing with people diagnosed with MS. By the time most of us are given the devestating news that we do have MS, there is a tremendous sense of relief. We need a name for this, a specialist that can help, a reason for feeling like hell. Many of us have gone through several doctors and what feels like a thousand tests to get there. Me included. I have all of your symptoms. It took me two years and one needless brain surgery to get an answer – finally a spinal tap showed Obands and that was enough.

    I have hemicrania continua – sort of trigemenial neuralgia on crack. The head and facial pain never stops. It’s due to a lesion in my brain stem. I get nerve block injections in my face once a month and it helps some. For the restless legs (which will drive a person insane!) I take Mirapex. It’s a wonder drug.

    Can you start over with a new neuologist? I did…three times. Luckily there is a Mayo near me and they are still a bit stymied by my weird case, but at least they are interested and up to date on the latest information. I hope you find a doctor who will help you get a diagnosis quikcly and then start dealing with your symptoms. It was the hardest part for me but I knew in my heart that I had to keep looking until I found someone who cared.

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