New Member Neurological issues

[gurs]

I was reading one of the CNS articles on this great site by Dr. Steven Mandel....boy, this guy sounds like he knows what he is talking about!!
He is in Philadelphia, PA..you can find info on him on the web.  I would also consider the Cleveland Clinic. I went there 5 years ago and was impressed!

Gursie

[Butterfly]

Hi Lindar. I have tried provigil for the brain fog. It's typically given to patients that can't stay awake. I only took this once and had a severe allergic reaction to it (and celexa and ambien). I had extreme nerve irritation, numbness/tingling radiating from my neck to my hands. It also raised my blood pressure. By the time I got to the emergency room I couldn't speak in sentences. I couldn't think clearly. Everything (sound, touch, etc) irritated me. I couldn't sit still-just kept on rocking back and forth. I was gorked out of my mind. I don't think this type of reaction is normal-just wanted to share my experiences. I was seen at the Mayo Clinic in Rochester Minnesota in February of this year. My 1st rheumy didn't think the brain fog and extreme fatigue I was experiencing was related to sjogren's. She wanted me to have a full evaluation. It did take a referral from her. I was not able to make an appointment myself. My initial appointment was with the neurology clinic-however I was seen by several clinics while I was there including rheumatology. I was not impressed with the rheumatology clinic-the doctor didn't spend more than 5 minutes with me and was not very compassionate. The average stay is about 5-9 days depending on what tests/visits are ordered. They do a great job getting everything done in a timely fashion. Luckily, they were on my insurance so I didn't have to pay an out of pocket fee. I did have airfare and hotel expenses though. Most of the hotels in the area give a Mayo Clinic discount. I don't think they are experts in sjogren's but do have some knowledge-that was my experience anyway. I came back not knowing anymore that when I left. They did do a few tests that hadn't been done before-ruled some other things out. If I had it to do over again, I would go to a sjogren's clinic. Dr Vivino is supposed to be an expert in the field. He practices in Pennsylvania. There are several others out there. I have been thru 2 rheumys and still haven't found a doctor that I think can help me, is compassionate, will listen, is willing to learn more about sjogren's, etc. Don't give up. There are good doctors out there. We just have to keep trying. We all deserve to find that great doctor. I hope you find yours soon!