Sorry your haveing such a hard time and so sick right now, Im also in a major flair and hit the rong button also before im through typeing.
I also have CNS Involvement. Dr's think it is sjogrens that has caused the cns involvement but it could be lupus or plain cns vasculitis there realy not sure without a brain biopsy and im just
not wanting to go there unless life of death situation. I can tell you my symtoms and situation.
I also have severe short term memory problems, balance issues every day, use a cane to walk and balance,frontlobal dementia becuse of so manny lesions on the brain, dizziness, tremmors,
numbness in legs,feet hands arms and face, head, becuse of damaged nerves caused by the cns brain dammage that controls the blood flow to the nerves in my legs and face and hands.
The meds they have me on to slow the cns vasculitis, lupus and sjogrens now is
prednsone 20mg a day and imuran 100mg a day and was on prolosec but thay cahnged it for a med called dexilant for my stomach where the pred has just cooked it and mouth.
Along with lots of other meds, I just saw my neuro and rummy becuse of new severe dizzy spells
and severe flareing, and legs and but and back very numb. neuro wanted to up my imuran but my rummy said i didnt weigh enough to up imuran to 150mg, both say in in a severe flair of lupus ,sjogrens, and cns vasculitis and my meds arent working right now, but say the imuran takes 3 to 6 monthe to start working and ive been on it for almost 5 monthe now.
Both dr's say even though im on meds i will still have bad flairs of the diseases from time to time. So my rummy is giveing me a little more time for the imuram and pred to start working and if it dosent work to slow the cns vasculitis then he wants to go to either salumedrol or
methoexate witch i have diabetes also and uping the pred makes my sugar also go up
so i dont know how that is gonna work either . Im just in a wait and see mode , and
so hopeing this imuran and pred starts working.
cns involvement for me has taken my ability to drive, do bills, handle money at times i get very confused, sence of judgement, and so many more other things i use to take for granted that now
are impossible or i have learned new ways to do them. So ive surley had to regroup and and
take a deep breath and accept a lot of things and different ways of doing them that i didnt think i would have to do at this age in life.
Mostly becuse it took dr's so many years to figure out what was going on with me , and by the time i went to the er with numbness and the mri found all the lesions on my brain a lot of the dammage had already been done. But if dr's find it soon enough they can get you on meds to prevent a lot of the dammage and get the cns involvement under comtrol.
And sounds like your doctors are on the ball to getting you better !! And im sure hopeing your new meds work and get you to feeling a lot better, and get your flair under control!!
Im here any time you need to talk, Sending you Big hug's !!!!! And wishing you the best of luck
that your new med's work!!!! ~Diane~
~Where Hope Grow's, Miracle's Blossom~
(CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.