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Brie (@brie87144)

Autoimmune diagnosing problem

Autoimmune Diseases | Last Active: Dec 4, 2018 | Replies (211)

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@wesbig

I feel your pain, I wish that there was something I could say or do to make you feel better, but I can’t. I currently am going to six different doctors. Last week I was taking ten pills a day. Bye the end of the week I never felt worse. I have been to two rheumatologist and there still not sure what is wrong. I have several good doctors at this time. One thing I found out is if they don’t take the time to listen to you, let them go and look for someone else. Always keep copies of your lab work to show your next doc. Also have you seen an endocrinologist for your low cortisol. I have been through that. It took about six months to get my levels back to normal. Not sure I said anything that you didn’t already know. Hope you start feeling better.

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Thank you for your support. My endocrinologist is passive, saying let me know if your rheum wants to do the taper.

I think we need to see the outcome of the neurologist’s evaluation. I have more comfort with him. i told him about my B6 deficit as well and he warned neurological symptoms can get worse with too much B6.

The volume of pills is daunting. And who knows if side effects are adding to our challenges. For me, the passiveness to keep everything status quo is hard when you dont feel well. Sometimes I feel like we just have to tolerate our as is state because the docs feel it is the best that they can do.

For me, addressing falling is an issue. We are addressing with a walker, but why do I fall. Last night I stood up and next thing I know I am trying to land back in the chair…no dizziness.

I guess we just need to keep asking questions. Next week I will be evaluated by a physical therapist. Between him and the neurologist, maybe we can find an answer.

Thanks much.

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