Hello,new here and so scared after 7 yr's of doctors finaly a diagnosis cns lupus & s
I had been on m.s. forum just got through being run through ringer by second
neuro, as my lates symptoms left my legs numby from knees down side of face
loss of balance,cognitive,short term memory loss ,dizziness etc.
had lumbar puncture,eeg,emg/ncv,mri's head,back,neck by last neuro. have damaged nerves in legs,hand's,carpal tunnel. and 12 lesions on the brain in the subcortial mostly white matter, frontal lobes stateing most likley demyelateing disease. this is the latest findings due to an er visit when my face & legs went numb& balance issues aprox 7months ago.
was totaly freaked out to find i had 12 brain lesions. when i was sent to first neuro 3 yr's ago for same issues along with lupus and autoamuine symptoms
he just blew me off and ran some test at that time mri with die revealed 1 lesion in the white matter.
for 7yr's that i know of been haveing these on and off symptoms
constant low grade fevers 99.9 -100.4
severe stomach pain
severe knee & back pain
mouth & nose ulcers
skin rashes & hives
hair falling out badly
cognitive issues, problems multitasking
headaches, dizziness, virtigo spells
severs fatigue,blured vision
frequent urination, direrear
constant broncitus & u.t.i's that had never had problem with
fingers turn white & red numb
any way 2nd reumatologist kept doing blood work only thing come back positive was high ana and elevated ana at times elevated wbc and she would
tell me i had all the symptoms of lupus & sjogrens & ryanuads but my blood work kept comming back normal for lupus & sjogrens. while all the time i kept
getting sicker and had loss so much weight.
she was a very young doctor so finaly she put me on a 5mg predizone witch
helped a bit and sent me to another rumey at a teaching hospital to help her get a diagnosis. well he took 15 tubes of blood,lung x-ray & hands x-ray ask
lots of questions checked me out thourly went through all my recent test & medical records and seemed very upset previous rumey had not ran sertin test
and the shape she had let me get in for her to be doctoring me for past 2yr's.
he went to explaneing about meds for lupus and sjogrens and how some were toxic and some would cause infections and cancers. long story short i ask him colud he please tell me what disease he was leaning toward after 7 yrs of being sick & not knowing i needed to know some kind of name before i had a nervous breakdown! so he tells me looks like lupus & sjogrens so i ask is that what has gone to my brain and he said yes, but let's see what the blood work says and the lumbar puncture shows so i was relived to finaly have a name
to this monster of a disease, but also scared to death cause what i read on it
cns lupus or sjorgrens has a very poor outcome.
i go back dec 21st to get final results and diagnosis and he says he is gonna have me a treatment plan and will do his best to help me and try to put me on a medicine that will have the least toxic affect.
sorry so long, but was trying to give ya some background on introduceing myself. it has been a long road and am haveing a hard time dealing with
the lupus and sjogrens gone to my brain expecialy when you keep telling your specialist something is bad wrong and your getting worse.
would appreciate any input any one has expecialy if you have been diagnosed with cns lupus. Thank's so very much for listening & have a blessed day!!!