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At a loss, multiple consultations still no answer...any idea?
Autoimmune Diseases | Last Active: Nov 28, 2023 | Replies (338)Comment receiving replies
Glad you have a good neurologist, my neurolologist and rheumatologist both leave a lot to be desired! I often get tired of trying to figure things out and have come to all conclusions and self-treatment decisions for the past 3 yrs. Luckily I have managed to keep symptoms from progressing too much. Doctors either have inadequate knowledge of, or the time to treat, you must be willing to do your own research and be your own advocate these days.
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I agree…My neurologist warned me I might not even be seen by a rheumatologist! Sure enough, I get stuck with a PA who was completely unhelpful after two visits, so I canceled the third visit, asked to see a MD, and was refused. Very sad as I look at Mayo and John Hopkins and they have a webpage on Sjogren’s and do a team approach for treatment.
So, I found the Rheumatology Dept. Director at the only other big hospital in the region. I wrote her and her assistant got back to me the next day. Said to get a referral and they’d definitely see me. So, I I’ve got a request into my neurologist.
He also had referred me months ago to a neuromuscular doctor, who I finally get to see in two weeks, so I’m a little more hopeful!
I did start taking R-ALA/S-ALA, ALCAR, and complete Omegas, with GLA, and B vitamins. And, I take 300 mg Gabapentin at night to help me sleep.I also don’t do refined sugar, white flour, etc. and I walk a lot. My numbness has continued to worsen, as have my feet, hands, and muscles. But I don’t have the sharp nerve pains as much.
I’m glad your managing your symptoms somewhat. Perhaps I’ll have better results as I keep my self-treatment up longer. Anything else natural you’d recommend?