Thanks Shelley, I'm definitely bringing this up with her tomorrow, it will be interesting to see what she tells me.
DaisyMae

Hello DaisyMae!

I wanted to say hi and tell you that I am a fellow autoimmune sufferer. I test positive for lupus and have the RH factor (have arthritis) and am diagnosed with the 'antiphospholipid syndrom'.

I had a stroke at 19 (am in my late 40's now) and it left me with central and peripheral vertigo due to the 'APS'.

My diagnoses came only a few years ago after being ill....forever. I have also had 2 muscle biopsies that show myopathy/denervation. That being a problem for the rheumatologist, because she doesn't know if the positive ANA is from the muscle disease or lupus. I recently had a series of small strokes, again.

Either way I am on 'Methotrexate, Prednisone, Folic Acid, Topamax (for migraine) Neurontin, Cymbalta, Alprazolam.

It took my body a while to get used to the MTX. The prednisone made me feel amazing....until they tapered some what.

I hope your appointment went well. Good luck with everything!

Hi There Colorado Chick,
I too am new here and afraid to click on anything as I am not to versed in all tis yet, but in I dive as my issues are such I hv to be proactive, as some docs are not and they will string you along and out till ou get fed up...i hv bn dx'd w/ SLEM in severe form, and am on plaquenil 2x a day, then got on prednisone, and they tk it away, then dapsone and it did real damage after only thre weks and days, so it gone and now all symtoms are bk w/a real vengenance and its bad, lesions all over trunk and in various stages of develpmnt and healing w/alot of pain...my ? is Hv you found any drug particularly effective, or drug combos that wrk for you? I am in search of a drug that will wrk w/plaquenil effectively...over the long haul....so any info u hv that you can pass along or get from fellow auto immune disease sufferers, pls pass it on..am anxious for any news from all sources. It took 14 ys to get the rt. diagnosis, at least they think its rt., but now nothing else hlpful out there----I just cant beleive that.there has got to be something....thanks for listening and hope to hear from you, and if you hv bad health problems, i wil be thinking and prayin for you to be well, be happy, and smile, even if its only in your heart.....deesgal

BlueMoon,

Have you noticed if the Folic Acid affected your urine output at all? I was taking it for a while and it immediately made me pee twice as much which then made me really thirsty. Since going off it, I am back to normal. Just wonderful.

i'm constanting trying to see how all the pieces attempt to fit together and i have questions.
heard that gluten can affect during a flare? what does a reading of 26 mean on a celiac bloodwork test?
one doc says i'm clinically hypothyriod. hashimoto's is thrown around. never lands. my anti-tpo is 3120! anybody else ever had such an idiotic level? what to do?
positive anti-dna and ana test as well
have had 8 years of neuro drama.
go through episodes lasting 4-6 months
approx every 2-3 years
where the left side of my body shuts down
we're presently calling it by what it does..
relapsing-remitting demyelinating disease
of the autoimmune garden variety..
a little bit of everything
that's my vent
any suggestions on how to tail these bunny rabbits into their conclusive holes?
right now it seems like there are too many rabbit holes and not a glimpse of Peter Cottontail!
Thanks.