who i go from here - Multiple Sclerosis Message Board

agravy · 04-24-2008, 12:56 PM

i'm concerned. i've been in limbo land since 2005. i've been on solu-medrol iv infusion 2 times monthly for the past year now & am scheduled for a baclofen pump surgery may 5th. they have yet to find lesions, but my neuro says he has not ruled out ms. i have been tested & ruled out everything under the sun. my lp showed an elevated mylen basic protien count, but no o-bands. i have offically been dx with the following: transver myletis, 2 cases of on, mylepothy(sp?), lumbar myepothy, degenerative disc disease, & demylenating disease- unspecified(this is the ms undiagnosed). i also have drop foot & severe spasticity & numbness in my right leg & have to wear a legbrace just so i can walk. i am in the process of applying for disability which my neuro & the dr.'s at my pain clinic definitly feel i need to be on. my thing is some of you have stated that you can get a clinical dx w/out the lesions. with all of the things that i have that are usually due to ms, why won't my neuro go ahead & give me the dx so i can get on the ms drugs to keep me from getting any worse. there are patients that i talk to while i'm getting my infusions that state that it took them 13 years to have lesions present & they had everything i have & now she is crippled & in a wheelchair because she didn't get meds soon enough. this terrifies me!!!! i don't won't thisto happen to me. my neuro knows it's ms or he wouldn't keep telling me he'snot ruling it out, so why won't he get off his butt & help me. i have 2 daughters (14 & 6 ) to raise & i don't need to be sitting around stressed out worring about if i have ms or not when i just know that i do. any suggestions?

april1848 · 04-24-2008, 01:24 PM

There's something called the McDonald Criteria that tells what a doctor needs before he/she can diagnose MS. I'm sure others here know more about it than I do. You can google it though, print it out and take it to your doctor.

I feel for you. It sounds like your doctor is pretty sure it's MS, so perhaps you just don't meet the criteria. I would show him the McDonald list and see what you're missing to get the diagnosis.

I think you can start the medications (interferons, copaxone) even without a diagnosis. I believe this used to not be the case but they changed it. I don't blame you for wanting to get started on treatment as soon as possible.

Are you seeing a regular neuro or an MS specialist? If you're not seeing a specialist I highly recommend that you do. A specific diagnosis might help you in getting Disability too, so I would definitely do that if you haven't.

I'm sorry, it sounds like you've been through heck. Don't give up though! I think it's time to get another opinion. Please keep us updated, I'll be thinking about you!

agravy · 04-24-2008, 03:10 PM

let me back up just a little bit. in june of '05 i went to UAB to a ms specialist who ran evry test in the book on me after i went to the er with complete paralisis on my rt side. they sent me straight to him where after all the test were completed gave me the dx of ms. i was in denial so i went to the neuro i had been seeing close to home who is a ms specialist also. he is the one who is treating me now.

april1848 · 04-24-2008, 06:07 PM

Hopefully with the diagnosis you can get started on medication. It sounds like you're not in denial anymore.

MS is no walk in the park but it isn't the end of the world. If you really want to get started on treatment, maybe you could go back to the doc who gave you the MS diagnosis.