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CLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: Dec 7 10:15pm | Replies (323)Comment receiving replies
My husband spent 54 days in MD Anderson Cancer Center in Houston and was diagnosed with Clippers in March 2023. He went cross eyed, couldn't walk, sit up or hold anything. He had tremors every 2 minutes for as long as he was awake and could not talk or walk during those times. They would last 15 seconds They started him on 1000 mg of prednisone a day for 7 days then started tapering off weekly every 7 days. He had been completly off of predinsone for 10 months and he could feel symptoms coming back. MDA told me today to find a neurologist to treat him they were a cancer hospital. I live in Houston. Everywhere I call, the person who answers the phone doesn't know if the docor has ever heard of Clippers. I don't have the energy and time to run and waste dry runs to doctors who have not heard of it. Could you all tell me what state you are being treated in?
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@jimbontexas I am sorry to hear that your husband isn’t doing well. At the beginning with this disease, there are lots of ups and downs. You might call one of the following organizations for a doctor recommendation. Call:
NORD. National Organization for Rare Diseases. https://rarediseases.org/
GARD. Genetic and Rare Disease organization. https://rarediseases.info.nih.gov/
These 2 organizations keep lists of physicians who deal in autoimmune diseases. You want to ask for neurologist or neuroimmunologist . Just take the names, make an appointment and then, ask the doctor if they are familiar with Clippers. A good doctor will tell you that they will study up and talk to doctors who do know Clippers. It’s a difficult disease but most people are doing OK once they get the disease under control. Are you willing to drive a distance to see this doctor? You can also ask if the new doctor would be willing to work with a local doctor? I only drive to Denver every 3-4 months. The rest of my doctors are this town.