[jprinz99]

so I saw the neuro again yesterday. Found out the bad spasms and contstant muscle tightness and discomfort is because I am low in potassium and magnesium, as well as sodium. Gotta start taking yet another pill and adding ceratin things to my diet - no biggie.

Anyway I have a stupid question - do I, or do I not, officially have a diagnosis of MS? The last several places I have been (wound clinic, MD offices, and radiology) all ask the same basic stuff (name, social etc, medications, etc) and then say "So you have epilepsy and MS..." Heck, even my neuro's nurse said it yesterady when she was going over my meds and any complaints or concerns! I just said I do??? She quickly stammered and said she could be mistaken and apologized.

I thought the neuro said he was holding off on declaring yes, I do have MS as 1) it had ramifications on insurance and 2)there was a possibility that it could be something else neuro related. He said I was "highly probable" which was a step up from being "possibe MS".

I feel so niave and friggin ignorant- I forgot to ask him outright if I was now 'official' as we got off on the whole deficiency thing and talking about his impending vacation & my upcoing cruise. I do not see him again for 6 months.

So, do I, or don't I, have an official diagnosis of MS (and someone just forgot to tell me...)
jane

[Aarcyn]

simple answer?

I would call your Neuro if I was you and just ask the question. Leave it on his voice mail and have him get back to you.

Have you had an MRI or LP? Those two can help.

[NurseNancy]

well, i see a couple of options.
you have a legal right to get any medical paperwork that's done on you.
that includes dr notes, test results, etc.
you could ask for a copy of the note from your last visit. usually you will have to sign a release for the info. and believe me, sometimes those notes are very interesting.

you could also call the office with this question. it will be conveyed to the dr and they should call you back with an answer.

and, if he's sending a copy of his notes to your pcp you could ask them.

[jprinz99]

Thank you guys. I had a MRI almost 2 years ago and it showed 2 areas but they didnot have typical Dawson's finger, but definately showed demyliation (sp?) and it also showed a large pineal cyst (deemed to dificult to drain or remove). LP showed high levels of antibodies that indicated blood-brain barrier crossing.

I do know he was waiting on evidence of more flares that he could document/observe. I just got done with infions the other month froma flare so maybe that was the final check off the list and someone forgot to tell me...

Doctor is gone for 3 weeks so will call when he gets back (if I remember LOL)

[SallyC]

It sure sounds like a "welcome to the club" to me. Sorry..

[AynaDee]

hey there Jane!

I am really sorry to hear that the neuro office is kinda tossing you around. I hate how the system works, I really do.

Have you had an MRI yet? Or spinal tap?

When I was dx last year with MS, I was first misdiagnosed for a month. The doc thought I was a hypochondriac. Then after a month of my health rotting away and I was waking up out of my sleep feeling like I was dying, I saw a different doc.

He knew there was something neurologically wrong with me. He ordered an MRI for that following monday and said that I would have results by friday and they would have an idea of what was wrong with me, well things went a lil different. My MS had woke me up saturday night/sundaymorning making me feel like I was dying, I couldn't breathe right, walk, talk, no coordination, it was bad so my grandparents rushed me to the hospital and they went ahead and gave me my MRI that day, read the results that day, neuro walked in and said that I have alot of plaque in my brain and they needed to do a spinal tap to verify because I had a 99.9% chance that I was an MS patient.

Sooooo I got that nasty spinal tap to verify and here I am!

I guess they do the spinal tap to verify that you don't have ..I wanna say menningitis? but I could be wrong, they said if my spinal fluid was cloudy then I did NOT have MS. It was clear. lol

So what tests have they done on you for your dx?
It seems to me like they think you have MS but just haven't done those few things to stamp and official-ize it?

If it were me, since it's not official yet, I would go with the ' I DON'T have MS' for now at least.
Sorry you're in limboland right now. It definitely sucks. Hang in there!

-Ana D

[SandyC]

I'd call and ask. But I am also a need to know NOW gal.