I am going to whine a bit but I don't really have any where else to do it. I have been diagnosed with SCLE Lupus (good news is that it doesn't affect the organs... yeah, right). I have been having "spells" for awhile and went to the Neuro a few weeks ago and had tons of tests run. This week my work had to call 911 because of a seizure. Now my license has been suspended, I work 30 miles from work (out in the country so no buses or taxes), I can't remember anything anyway and it looks like I am on a 6 week leave. I am a single mother and this entire thing is going to turn my life upside down. 6 months with no driving? What about money? Lupus is bad enough but the rest of this is sometimes too much to fathom
I was diagnosed with Lupus 17years ago. In the last few years I have developed severe headaches, confusion, speech issues, and some numbness and tingling. I am seeing a neurologist and so far he can not figure it out. My mother says that she wil be talking to me and I will "zone out" and it will take her awhile to get my attention. I dont know what to do anymore. I have had CT Scans, EEGs, MRIs, LPs. It is just so frustrating. I also have gained weight in the last several years. Everytime I go on prednisone my weight increases a little more. I have felt for a while that my Rheumotologist was being dismissive. My last visit he told me I was way overweight and I didnt feel well because I was overweight. I told him I was losing. I had lost 15 pounds since december. He told me it was probably muscle weight. He also said I was making a "career" out of going to the Dr. I felt so hopeless. Any suggestions?
I was diagnosed with "UCTD" years ago and before that with a 'Seizure Disorder", but 2 neurologists and 3 years later an "epilepsy specialist" said, that I did not have a "Seizure Disorder". But I kept taking neurontin for my pain, it helps a lot. But lately I have some weird "episodes" and I think it might be seizure related. Anyway, I live in the Baltimore Area. Since you live in Maryland, I would like to know which doctors you are seeing. My rheumatologist is Dr. Ludmer and I like her a lot! The neurologist is at Johns Hopkins, his name is Dr. Lesser. I'm wondering whether you know them?! Please let me know!
Hope you're doing o. k.!!!
And try not to worry!
Hey I just realized your reply to my post so sorry it took me so long to get back to you! I actually go to Johns Hopkins for both of my specialists. My rheumy is Dr. Manno at JH's Rheumatology Dept and my neuro is Dr. Probasco at JH. They both have "higher ups" above them so to speak that they work with. I have not heard of your drs but Im wondering if Dr. Ludmer is an actual "Lupus" Specialist or what? Also, if they said you didn't have a seizure disorder than what would you have? seizure related to luipus or "UTCD" or what?