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Your advice is worth a lot...

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Old 04-19-2010, 01:29 PM   #1
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Your advice is worth a lot...

I have been diagnosed with Fibromyalgia, its not pleasant. I cannot help thinking though that this is not the full picture. Don't misunderstand me, I don't want anything else, I just have a hunch.
I have many symptoms, and have had many tests done, mostly negative. One brainstem lesion and positive lumbar puncture.
Anyway, I am now being seen by a Rheumatologist who seems to be listening, but is he looking at the bigger picture, I am not sure. He had decided to give me Tramadol for the pain and Gabopentin. I question the Gabopentin, as it is given for Epilepsy and I don't have Epilepsy. I have muscle spasms, but not fits.
This last three months has become pretty unbearable with the level of pain. It came on like a bolt out of the blue. I felt my symptoms were bad enough, ie, muscle spasms, brain fog, electric shock feelings, nausea, muscle cramps, slurred speech (at times) and so on...........However, I sem to have suddenly gone down like a lead balloon. The pain is mainly in my pelvis region and lower back, travelling down my legs. Also my right foot has become quite painful to walk on. I have resorted to using crutches. My whole torso locks at times and I am stuck or feel frozen with the pain. If I put my head down I get a hell of a jolt like an electric shock. My mobility has become appalling.
My GP has become very much of the attitude, ah well, you only have fibro, get on with it and take the meds.
I seem to be stuck. I have asked for another lumbar puncture, certainly not because I enjoy them, but because even though it was positive, they said it was just an infection, but what infection they don't know. I understand that you need more than one lesion to even consider it being MS, but the neuro I had spoke to me like I was an idiot and made me feel like I was wasting his time.
I almost feel that telling me its Fibro is a copn out, because they don't really no.
what do I do?.....I really don't want to hack my GP off but I feel I am not being told everything or at least followed up. They keep saying, well you had every test so we don't kneed to do anymore. My last MRI was two years ago, I feel another one is due.
Please try to give me some solid advice and suggestions here, I honestly do not know where to go or what to do, and If I do come across as being a hypochondriac or timewaster based on the info I have written, then please tell me, I will read and listen.

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Old 04-19-2010, 07:20 PM   #2
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Re: Your advice is worth a lot...

HI Topsy.
You do seem to be in a pickle, dont you? Sorry to hear of all the discomfort. Fibro is a catch all phrase, which has begun to be noticed in the medical society as a disease; however it simply means NERVE pain. Gabopentin is the generic for Neurontin, which is often given for nerve pain- its not always used for epilepsy. Most MSers do not get any relief from Gabopentin, because our nerve damage is differnt then those with Fibro- so it might be worth trying it just to see if it does help you. Warning though, do not stop it abruptly, make sure you wean off of it over a few weeks, otherwise it can cause seizures!

Youre seeing a Rheumy, which is good. Can you make an appt with a Neuro ? WIll he refer you to one? Youre right, the MRi is long overdue. A MRI can change from week to week...what was only one lesion 2 years ago, could very well be more by now. You wont know if they dont do the test. As for the LP, its not going to help you find out about MS. If it makes you feel better to rule out other infections, you should do it, but overall, its not a conclusive test, except to rule out meningitis or PML. Your symtoms do not overtly sound like MS; however they do ring true of LYmes...has that been ruled out and has it been ruled out more then once? A simple western blot blood test is not accurate for Lymes- you should read up on it on Healthboards Lyme Board.

I hope this helps alittle...and that you find some answers.
RRMS- dx 05

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