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Multiple Autoimmune Diseases & Post Covid

Autoimmune Diseases | Last Active: Oct 12, 2023 | Replies (113)

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@scabonmybrain

Hi Philip. I just joined this site a minute ago and yours is the first thing I've read.
I'm sorry you had that experience. Some doctors don't realize that the size of their ego matters. In my case it is the neurologist who have outgrown their britches. I've seen many over the last 20 years and I've never been so categorically dismissed by any other group of people. After my last attempt to meet one ended with me crying in my car for over an hour before I felt well enough to drive home, I have taken a break from doctors. That was about 18 months ago.
So I've been out of my meds for about 6 months now and the SSA wants to schedule a disability progress review and I've moved to another state...so I've managed to get backed into a corner due to the anxiety I get from having to rely on the mercy of a medical professional who would probably rather be my coroner.
The insurance regards neuros as MS Specialists but almost all that I have been referred to specialized in geriatric sleep disorders and their knowledge of current Multiple Sclerosis treatments couldn't fill a thimble.
I hope you find a doctor that respects you and respects your wishes regarding treatment over his own personal prejudices.
Sometimes, no matter how educated your doctor is, the patient actually has a better understanding of what works for themselves. Especially when they live with a chronic condition. Some doctors will lie straight to your face instead of admitting that they won't prescribe you something because they think you look like you will abuse it. Better to know in the very beginning that they think you are unworthy of their time.
Really they have no business treating patients this way. If they don't respect me as a person then respect my diagnosis and deny me nothing that is routinely used and indicated for my disease.
And my first contribution on this site probably violated something so it may also be my last.
Good luck to you with your search.
Laurie

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Replies to "Hi Philip. I just joined this site a minute ago and yours is the first thing..."

Hi Laurie, welcome. Do you live with multiple sclerosis?

Hopefully you get on track with some actual help.
I have MS, and my body only tolerates a few foods, so I rely on supplements as well. It will help to find a doctor who cares, and gets you some meds, so then you can work on whatever you can with diet and lifestyle. Remember, dendrites can take their time repairing so try not to get impatient. Hoping for the best, and thus entire community understands to some degree what it's like to be mistreated or misunderstood by the medical profession. Luckily I have been blessed with very caring and understanding doctors. Its not their fault that the treatments aren't getting approved for the day to day stuff.... the studies ti repair dendrites could last 2 years or more.
On that note, I thought that mayo clinic had made a remylenating drug, and it's supposed to unshielded soon. Can I get on a trial or something please Mayo clinic?, I'm a good candidate because the drug would be safer for me than other drugs due to allergies and reactions....
Thanks