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Old 08-30-2012, 04:35 PM   #1
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doc says im Fibro-ish .. I'm terrifed its other things

Hi there. Long story short I've been sick for 8 years seeking an answer it originally started when I went to Mexico in 08 when I was 22. I was at Mayo Clinc Jax. Last december and they said I had CSS but my neuro says no. In Oct of last year I had a root canal and was fine for about 5 days after. I suddenly couldn't get out of bed after those 5 days. I was very shaky, dizzy, weak, body vibrating, tired and just felt terrible. Fast foward to today and I still am. My neruo said I'm Fibro-ish . I have been to every doc u can think of , had every test and nothing really.

I currently constantly feel like I'm vibrating, my muscles starting in the past two days are started to hurt and feel like they need to constantly be stretched. Sometimes it even feels "weird" to use my hands like they're not mine or they're hard to move. I never had pain before today but I have constant dizziness, constant (percieved) weakness, fatigue, blurry vision. My "pain" seems be in my legs esp under my butt and down the back of my thighs, they feel like they need to be stretched and I do stretch them and then they just feel weak and sore. I have constant all over muscle spasms/twitching esp in my legs. I'm not gonna lie I'm terrified its ALS and I can see that's a common fear here! I also have massive brain fog.ugh!

I had an EEG test a month or so ago and it came back normal but that was before pain started. Are these symptoms typical of Fibro? Can something like a root canal set it off like that? I also had a period of about 4 weeks where I felt pretty good, i was even running then I went bowling and forget it the next day I couldn't get out of bed again weak shaky tired. I rarely ever have pain and if I do it was usually only in my wrist. I thought you had to be sore at the trigger points to have a diagnosis.

My doctor tried to prescribe me Savella but after the bad reviews I did some research and went with SAM-e. I haven't noticed too much difference but I just started it this week

Last edited by MPVSGirl; 08-30-2012 at 04:39 PM.

 
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Old 08-30-2012, 05:54 PM   #2
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Re: doc says im Fibro-ish .. I'm terrifed its other things

The fatigue, brain fog, muscle twitching/weakness, and the chronic nature with remissions and exaccerbations could point to an autoimmune disease like lupus. With the blurred vision, it would make sense to rule out MS with an MRI and visual evoked potential test if needed. I would see a rheumatologist as well as your neurologist. Fibromyalgia is more of a widespread pain syndrome, which you don't seem to have. I would also get serum B12, folate and CK muscle enzyme tested, which can reflect abnormalities related to neuromuscular symptoms. After 8 years, you deserve to get some in depth testing and an answer to what is happening.

 
Old 08-30-2012, 06:07 PM   #3
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Re: doc says im Fibro-ish .. I'm terrifed its other things

Quote:
Originally Posted by ladybud View Post
The fatigue, brain fog, muscle twitching/weakness, and the chronic nature with remissions and exaccerbations could point to an autoimmune disease like lupus. With the blurred vision, it would make sense to rule out MS with an MRI and visual evoked potential test if needed. I would see a rheumatologist as well as your neurologist. Fibromyalgia is more of a widespread pain syndrome, which you don't seem to have. I would also get serum B12, folate and CK muscle enzyme tested, which can reflect abnormalities related to neuromuscular symptoms. After 8 years, you deserve to get some in depth testing and an answer to what is happening.
Hi I've had all that testing done and seen a Rheumatologist. Several. I had extensive testing done at Mayo including all vitamins and 18 vials of blood taken. Every Rheumy I've been to has said they do not think its Autoimmune even though I do exhibit those tendencies. I've had an MRI, several, for MS over the years and always negative. I've had testing for Bechets and Lupus, all came back negative as well as Lyme disease.. thats why they can only say i'm Fibro-ish.

 
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