wow thanks Laura. yes, you sound just like me. obsessed with getting somewhere in this fight and trying to succeed at it to get answers.
im definitely ready to go to the rheumatologist and see what they say, also i got my family doctor to order the Western Blot Lyme test from CA, so that should be in soon and i can go get that done.
ill update when i do go back to the doctor soon/ next week.
yesterday i had another severe pain feeling that ran down the back of my neck and into my back/ shoulder blade. SOOO absolutely painful, i couldnt even sit at my desk at work without wanting to cry. yesterday evening and into sleep that night i wore a therma care heat pad that is used to wrap around yoru back. i wrapped it over my shoulder around my neck and under my left arm to try to get the heat to hit it. it doesnt hurt as bad today, but it is still very painful. :/
thanks guys for all your input
Sounds like fibro to me, however there is no f
diagnostic test to prove you have it. There are certain points on your body, either 16 or 18, if you've had pain in 11 (I think) of those points for 3 mos or longer they can dx you.
Personally, I wouldn't waste my time or the ms specialists time since there are no lesions on your brain or spine and the lp was negative. I think it's more important to have this lyme test first, and all of the other blood tests your pcp should have ran before sending you to a neuro.
Back to a fibro dx...fibro has many of the same sx as MS. Horrible fatigue, muscle spasms, memory problems, sleeping problems, depression. Although I'm unaware of any urinary problems related to fibro, there could be another explanation other than MS.
I admire your commitment to getting yourself a dx. I am the same. I get very focused and determined to get answers...almost to the point where I'm obsessed. That being said, I wouldn't throw all your eggs in the MS basket. Like I said earlier, I think you should go back to your pcp and have blood work done. Your lyme test, vitamin deficiencies, an ANA test, basic metabolic panel for your glucose level, etc. These should have been done from the very beginning, and will help with a dx or rule another out.
I would still see the rheumy, because of the fibro. The rheumy can also run tests to check for RA, lupus, sjogrens, and other rheumatic diseases.
And of course, just because you might get one dx doesn't mean you don't have something else going on as well. Let's say you do get a fibro dx, and 6 mos latter you experience a bout of neuropathic pain. Fibro causes muscular pain but not neuropathic so there would have to be something else causing it other than the fibro.
**sighs** So much what ifs, and it could be this or that. I'm over tired and rambling. My apologizes.
Just go to your pcp and rheumy appts and let us know how it goes!
Good luck!
Laura
Correct, no lesions at all. sorry for the confusion guys.
my family doctor just ordered me the western blob lyme disease test to rule that out. and i see my rheumatologist on oct 26th to see if its fibromyalgia. im still leaning towards MS, but these other things are possinilities too. i guess we'll see!
today i wont up with a very bad muscle ache from my lower neck to the back of my sholder going towards my mid back. i definitely didnt sleep wrong, and i always sleep on my back. I'm so confused as to how i get these really bad muscle pains. i can hardly move my neck at all b/c it shoots fown my shoulder in the back and thoracis area. ugh :'( i cant take too much time off work, so i came in today, and now im suffering. even vicodin doesnt do anything!
Your mind may not be in the Lost & Found after all. This from a post in this thread...
"He said since the MRI showed no active lesions and the spinal tap was ok other then high protein that i can't get the Evoked Potential test done. Is this true that he "can't" send me to get it done, or can he still send me if i beg? "
Agreed Kyle that particular point needs clarification from her Neuro in regard to "no lesions" versus "no active lesions".
However, in one of her previous posts she states "no lesions on the MRI" and from somewhere I thought I "no active lesions". (Am I losing my mind? I can't even find that part!) (Don't mind me, I just may be losing my mind).
Lisa
Information gathering is the key to finding a diagnosis. Now you have more information.
It's important to clear up a point raised by LisaJF. You said your doctor said your MRI did not show any "active lesions". He needs to clarify what he means. Did your MRI show any inactive lesions? Did they show no lesions at all?
If they showed no lesions at all, and your LP did not show any O-Bands, it might not be MS. If you have inactive lesions, the negative LP doesn't really count for much these days.
Kyle