A new clinic has opened in Houston Texas at Baylor clinic specializing in SS. I have an appointment in November. I can't wait. I will let you know how it goes.
Rosie,
What wonderful news! I hope you have a good experience there. Please let us know.
Cheryl
how exciting! I wish there were something near me... Hope it goes well!
Let us know! I'm a native Houstonian living in MO. I still have family there.
Really great ... I'm looking forward to hearing about your experience there.
Thank you for the information
Cool! I wonder if they will be doing experimental stuff there.
I will keep you posted. Does anyone feel unsteady while walking? I have just experienced this now for the fifth time.
Rosie,
Have you had your appointment yet? My daughter has one there in February and I was wondering what your experience was like.
I feel weak when walking, just a general feeling of weakness. Is this what you mean?
Also, I am about 7 or 8 hours from Houston. I wonder if it would do me any good to try to get in? I don't know if sicca is really the same as sjs, but I have mixed connective tissue disorder?
I have called them and inquired a couple of times.
The first time, they said they wouldn't take me as I have already been diagnosed and am under a rheumy's care. Seems they primarily work to diagnose then recommend you to a physician for care.
The second time, I was looking for a neuro (was having trouble finding one) and wanted to know if they had one in their clinic that I could talk to and they said they didn't have one.
So to me, that is disconcerting. Sjogren's affects the nervous system tremendously and they don't even have one to help evaluate sjogren's patients?
I will be very interested in hearing your impressions with this clinic. I am not too impressed with them as of yet...but I have not actually spoken to any of their doctors or heard about how they handle their patients.
not sure how old this:
Baylor College of Medicine
Studies - Neurological Conditions Research
http://www.bcm.edu/clinicalstudies/index.cfm?pmid=7165
Myasthenia Gravis (H-28126)
Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles. MG is caused by a defect in the transmission of nerve impulses to muscles. It occurs when normal communication between the nerve and muscle is interrupted at the neuromuscular junction, which is the place where nerve cells connect with the muscles they control. The purpose of this study is to test the effectiveness and safety of an experimental drug. This investigational drug may partially improve muscle strength in patients with MG.
For more information, please contact Claire MacAdam at 713-798-5694.