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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
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?
Replies to "I agree…My neurologist warned me I might not even be seen by a rheumatologist! Sure enough,..."
@athenalee. Hi Athena. So very glad you stuck to your guns and were such a good advocate for yourself! Seeing a neurologist and a neuromuscular doctor would be so important for your conditions. Way to go!
I've been self-advocating too, on behalf of my IBS and daily longterm diarrhea. I've been imploring my doctor for months to stop a certain daily rapid motility prescription medication (Constella) which I took together with Lax-a-Day and Metamucil every morning. I was SURE it was the cause of the daily, very weakening diarrhea. She finally agreed to stop the RX, and lo and behold, no diarrhea ever since! However, she did start me on Dicetel after a three-day wait. I took the first pill as directed, with a full glass of water and with food. Within 3 hours I was throwing up violently many times. with a scarey show of blood at about the 4th time. My Care Aid stayed with me for a while but once she had to leave for her other duties, even more violent upchucking ensued. She summoned the nurse, who said if it continued, I needed to go by ambulance to the hospital E.R. It started again with a vengeance and an ambulance took me to the hospital, completely dehydrated and still extremely nauseated. Lab work, x-rays I.V. fluids as well as anti-nausea I.V.s x 2.
Finally sent home by ambulance at 2:30 a.m.!
And folks, I'm not saying either of these meds would be bad for YOU. I'm just extremely sensitive to prescription meds and this is solely my own reaction. Feeling better now, but still weak and wimpy. Determined to get my stamina back and be outdoors walking my mile some day soon! Laurie
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I’m so sorry to hear that most of your symptoms have worsened but glad your pain is less. I can only add, for what it’s worth, that I drink a smoothie each morning containing whey, creatine, 2-3 fruits, peanut butter, cocoa, protein drink, ground flaxseed and almond milk. I also take Vit. C, D, magnesium glycinate every day and B complex 1-2 x month. I walk plus use exercise equipment plus some lite yoga/stretching at home. I’d been seeing a P/T for my neck which has been bad lately and will probably see a chiropractor, also my ears/jaw have been sore/tight lately. I think it’s SS. also mindfulness, and prayer help me. I don’t see my rheumatologist again until Dec. but I’m going to look for another one beforehand. I do hope you get some answers and feel better soon.