whew...
okay just got back from seeing the nurse who actually is a physician's assistant? a PAC? she was...excellent. finally...someone to help me! halleluyah!
this is an exacerbation of my MS.
i do not have epilepsy. these are not seizures although they sure look like them.
she was really helpful and empathic.
she told me how she had a nurse friend come in and it totally looked like a seizure, sent her upstairs for an EEG, the EEG was clean, then sent her for an MRI....and turns out she had MS.
this sure is a funky disease. all sorts of things can go awry.
i just feel relief.
tremendous relief to know i am not dealing with a second disorder/issue
and...i got a prescription for prednisone and...a muscle relaxant.
the not knowing...can just drive ya nuts.
now i know...i am getting help for the symptoms...and i know this will eventually go away. i feel so much better emotionally.
of course they used this opportunity to talk MS meds again. i am not on any. so...i am listening. i have my next MRI in october. i feel...more ready to try something. i hear fingolimod may be ready for the public come january of next year. i would try an oral med. if not that...i...can't believe i am saying this but maybe...maybe i would try rebif.
we will see.
being forced to stare your disease right in the face...it ain't easy.
thanks for all your support and help. you all are very appreciated. thank you.
Come sit a spell and shoot the breeze. Sweeten the day with a little synchronicity...
12 comments:
I am glad the mystery is solved.
On to healing and bigger and better things.
Since this is an actual exacerbation, they didn't want to zap you with some Solumedrol? Smack the inflammation down strong?
The Baclofen (muscle relaxant) has worked very nicely for me. And Neurontin helps with the electric buzzes and tinglies.
I'm so glad that you got to see the PA. I really like my Nurse Practitioner. We even talked an hour on Friday (and I'm doing a Prednisone taper for some minor exacerbation myself.)
Hope you are feeling some relief.
It's so much better to know what something is and then to take the needed steps to thwart it. Glad it wasn't another affliction. Hang in there, lovely and brave lady.
"the not knowing...can just drive ya nuts".
So true. There is comfort in the knowing. The day to day struggle can be depressing as hell and to try and compile one more mystery on top of an already baffling disease, well, just sucks.....
I'm just now catching up and am not surprised by your new weird symptoms.
I also experienced a few months of what appeared to be seizures, but they were different from what you describe (I didn't have your zaps or lights or stomach mess). The EEG ruled out epilepsy because I had a faux-seizure while hooked up. Apparently, it was a case of weird spasticity.
I wish you well! -Joan
Glad to hear you got some answers...sorry to hear it is the same old one, MS. Actually, sorry to hear it CONTINUES to be the same old one...
Be well,
Linda D. in Seattle
I am so, so glad that you have a diagnosis at last and that it is nothing additional for you to worry about.
Thinking of you often x
Nice to hear you found someone to help you and that this is another phase of a strange disease, instead of something different.
Mystery solved...so glad it wasn't seizures. As for baclofen, I had an odd side effect that was not on their list. I developed weird shapes of darker pigment on my skin. Went away as soon as I stopped. I use Zanaflex (tizanadine) now and it works well.
As far as treatment...research and go with your gut. I'm not on any now, but reserve the right to change my mind at any time.
I too am glad you got some answers. A Physician Assistant is better than just a "nurse" and as I said in my last comment, he/she could order what you need.
The prednisone (more potent than a Dospak) which was ordered (60mg first day) will probably follow a taper (it is what I would order as a former PA)but I probably would have not suggested Baclofen because the side effects are funky when used with prednisone.
So if after two or three days, the Baclofen is still screwing you up, ask for the Requip.
Sounds like you have a PA you can work with and who will work with you.
Hang in there,
Anne
agreed, the not knowing can drive one batty!
grats on getting some answers, now i hope the meds can help....
I'm on Fingolimod in clinical trial and from what I've heard they will be going for FDA approval sometime in 2010. So you might need to wait a little longer for the pill format :( Being on a clinical trial is great though!
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