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CLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: Feb 17 10:21pm | Replies (151)Comment receiving replies
I would love to know where your neurologist is that has had 3 patients. I would love to take my husband to one that has seen several patients. I am in Houston but would travel.
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@jimbontexas Welcome to Connect. There are so few clippers patients that most doctors don’t recognize the disease. I was diagnosed in 2018 and none of the doctors here recognized it. I’m really sorry because that is not good news. There is a doctor at the Mayo Clinic, Dr. Tobin.
I recently received this from another patient. You might look into it.
CLIPPERS Repository: There is an exciting new research programme in CLIPPERS starting at the Mayo Clinic. If you have been diagnosed with CLIPPERS you can contribute to the research.
At the Department of MS and Autoimmune Neurology at the Mayo Clinic, we are attempting to better understand the diagnosis of CLIPPERS, its causes, outcomes and appropriate treatments. To do this, we are enrolling patients, diagnosed with CLIPPERS, into an observational study. If you have already been diagnosed with CLIPPERS and are interested in participating, you will be contacted by a member of our research team to complete a questionnaire. With your permission, we will retrieve your medical records from your doctors, including MRI scans, and if possible brain biopsy specimens. We may also ask you for an additional blood test, although this is not required. If you are interested in participating in this study, please contact Dr. Oliver Tobin.
Contact Details:
W. Oliver Tobin, M.B. B.Ch., Ph.D.
Fellow, Department of Neurology
Assistant Professor of Neurology, Mayo Clinic College of Medicine
Secretary: 507-538-6414
Fax: 507-266-4419
Email: tobin.william@mayo.edu
The best way to get help from Mayo Clinic is through your physicians. Ask them to call for you and get the best protocol. Many times your doctors can provide treatment with their guidance. And you won’t have to go anywhere
I’ve been doing pretty well on 5mg prednisone and Myfortic. But we all have ‘bad days’. Like I’ve had a bad day since we returned from a trip on Sunday. I just try to do nothing and eventually I feel better. I see a neuro-immunologist at the University of Colorado hospital. I have virtual or in-person visits every 3 month.
Your husband is SO lucky to have you with him. Please let me know what you learn about possible doctors