Hit a brick wall again. - Multiple Sclerosis Message Board

Albertagirl · 05-29-2009, 12:51 AM

Hi,

My LP results have come back normal.
Neuro sent letter to my family Dr stating that she does not know what is wrong with me and thinks that they may just need to dx me with fibromyalgia!
I have been dx AND undx with this TWICE already in the past 5 yrs!!

I have only seen this neuro twice, once in 2004 and again last month.
I have had 2 MRI's of head and spine in 2004 (without contrast) and another MRI of head last March (again without contrast).
All of them came back clear except for the most recent which showed some kind of build up in sinuses but they do not seem concerned about that so guess its nothing to worry about.

My Dr tells me that he does not agree with my neurologist and he does not believe at all that I have fibromyalgia yet he does not know what to make of my case.

I dont know if I should just give up trying to find out what is wrong with me yet I suffer so much and so often and have so many symptoms that I cannot ignore.

I should also mention that my neuro did dx me with dystonia of the right foot but she does not know the cause of it.
Can dystonia be seen in fibro??

I am just so tired of this and feel like I am back at square one again......I DO NOT want to start over with the round of tests and wait times in between appointments!!

I want to throw myself on the floor like a child and kick, scream and cry!! lol
I wish this would all just end and I could wake up feeling normal.....

MSNik · 05-29-2009, 04:53 AM

albertagirl,
Im sorry for you. Yes Dystonia can be seen with Fibro...its not uncommon. And, no, kicking and screaming like a child wont help (but if you think it will...

Can you afford the private costs associated with seeing another Neuro- one who is an MS Specialist? In the US, if you see one, it can take months to get an appt; however for a flat fee, you get another evaluation as well as direction. The tests, of course would be not included...but since you have so many test results, would it be worth it to go see a private Neuro to get another opinion? And, can you do that within your own health system?

Fibro- is very real. I know people who suffer much more then I do with my MS, who are dx with Fibro...it simply means nerve pain. And, I do know how bad nerve pain can be. I suffer with permanent nerve damage in my hands and fingers from my MS attack...

Please hang in there..and know we are all routing for you.
Nikki

MSJayhawk · 05-29-2009, 09:30 AM

I can feel your pain all the way south of you. Perhaps you might consider a visit south of the border and see a specialist here in the US. It could be fibro, but who really knows. Your doctor has the right idea, I think, but the time between neuro visits is difficult to fathom.