Neuros in and around California familiar with sjogrens
 

Hi all,

Haven't posted in a while. Things have been very tough with trying to get anyone to confidently treat my sjogrens. But the actual reason I'm posting is for a friend. Like me she has sjogrens, she has wasting, autonomic issues, a positive skin biopsy on one leg but other was negative and more recently a muscle biopsy showing denervation and renervation. She has seen a rheum specialising in sjogrens who wont take her on for treatment and suggests it needs to be a neurologist. She has seen a few neuros and has one at Mayo who appears clueless to what sjogrens can do. Like me, she has been told she needs to do more excercise and manage her anxiety in the past as if this is the cause of her issues!!

Are there any sjogrens aware neurologists near to California that any one can recommend. My friend is losing all strength and hope to carry on. I understand her despair because of the ignorance and lack of medical knowledge regarding sjogrens most neuros appear to have. She has insurance

Sorry to say, i don't know of any neuros experienced with Sjogren's in California. But I will say to stay away from Mayo...they don't have a clue about autoimmune diseases (especially Sjogren's) and the neurological impact. I have never heard any positive feedback from someone who went to Mayo with Sjogren's. I went there for 10 days and it was a waste of time, with exception of one physician that helped with my primary immune deficiency and IVIG dosing. But this was a separate condition being evaluated while I was there.

My best advice is to 'interview' (for lack of a better word) prospective physicians. Literally, call offices and discuss with the office staff (you have to get a head nurse or PA) and ask about the specialties of the physician...and if they have experience with Sjogren's. Most offices (good ones) will take the time to talk to you as they don't want to waste the doctors time either with patients coming in with conditions the doctor doesn't know much about or treat.

Also, go online and research profiles of prospective physicians. They usually have mini bios on the office website. You can learn a lot about the interests of the doctor and areas of expertise.

Hope this helps.

The other possibility--
 

--might be to contact the Western Neuropathy Association, which used to be the Northern California Chapter of the Neuropathy Association, and which remained intact even after the larger Neuropathy Association disbanded. It has the largest network of support groups and contacts in the United States, and extends not just through northern California, but the whole state, and I believe has subsidiaries in Oregon, Washington, and Arizona as well at this point.

I would think if anyone known of Sjogren's knowledgeable neurologists/rheumatologists in that part of the country, they would.

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