Multiple Autoimmune Diseases & Post Covid

Posted by mamafluh @mamafluh, Jan 7 10:34am

Has anyone else been having pain levels of 8-12 not normal. Things in pain, cognitive, insomnia, nerve issues, etc since having Covid?

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Have no taste or smell from Covid in October now another major issue rectal prolapse
Waiting for surgery in mean time I m in a lot of pain.

Ellen307

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Oh @ellen307 How terribly uncomfortable for you, though it’s painful. When are you scheduled for surgery? I added a link that has some good articles to read:
https://connect.mayoclinic.org/comment/53761/
You put your discussion under the Autoimmune Diseases group. May i ask what AD you have and if the prolapse is, in anyway, connected? How are you managing now before the surgery?

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@yli130

Could you let me know what kind of blood test from the cardiologist for the blood clots in lung?

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I will contact my Cardiologist’s office and find out for you. I will get an answer for you on Monday 💫✨

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I am fully understanding your concerns. I have nerve pain anyway. My pain in general since COVID has become intolerable at times. My cognitive function is off. I get dizzy, I am dropping things. I feel very scattered and emotional. I have fallen twice. I am going to be sixty-five and COVID long term symptoms, are still there. I finally just got my taste back after 3 months.

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@calygirl84

I have, I find post COVID symptoms still exist. I have Hoshimotos Thyroiditis, and Fibromyalgia, and migraines, and am a Legionaires survivor. Muscular skeletal issues have been exacerbated. My nerve pain is Worse. Another thing… . My Cardiologist, did a special blood test on me, to make sure I did not have any blood clots in my lungs. It’s just another very important thing to watch for.

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I have symptoms of Fibromyalgia but no doctor has diagnosis me with it. I seen Rheumatologist, Muscular Skeletal Neurologist, Physiatrist, and my Internal Medicine doctor. I've had all kinds of blood test, EMG, and 2 Skin Biopsy to see if I have Small Fiber Neuropathy. Can you tell me what does your nerve pain feel like? I'm so frustrated from not knowing what is wrong with me because I know something is terribly wrong. I'm unable to exercise, clean or cook with out enormous nerve pain. I'm so sorry you are having such pain.

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@calygirl84

I will contact my Cardiologist’s office and find out for you. I will get an answer for you on Monday 💫✨

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Thanks!

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@shack76

I have a completely different set but I'm up to four; Graves, Celiacs, (I can't remember name of the being skin disorder it start with a V…I don't have a bad case) most recently achalasia. The issue I'm currently dealing with is I've had some sort of reaction do the surgery from achalasia that is effects my nerves. It was worsened by the Covid Vaccinations. It's very difficult to find doctors who will look at the whole pitchure.
To be completely transparent I tried going to Rochester in October and the doctors I dealt with were not interested. And I got no explanation. I don't even know why the place gives patients doctors email addresses through the portal because they don't answer. My experience at Mayo was awful and I would never suggest anyone go there for anything as complex as multiple autoimmune syndrome. The doctors I dealt with seemed to believe drawing electronic records replaces talking to patients. Some of the records they drew on me were wrong (Mistake in electronic records are not uncommon .Jow much I don't know, but the evidence from the clinic notes they wrote on the portal was clear that some of the records were incorrect) and because they didn't want to listen to us, they didn't understand the context of others diagnosis. In the end they gave me some advise that would have been dangerous. All I left was a large bill and little in the way of help. I probably started in the wrong department was never giving the chance to see anyone outside the department. Just what was set up in advance.
I hope this is not standard practice for the greatest hospital in the world (I'll never be back to find out) but what I experienced was complete assembling medicine. This completely the wrong approach for anyone dealing with a complex diagnosis. Drawing electronic records and cutting edge technology does not replace talking to your patient. They didn't even give me an appointment after they finished the testing, just a short phone call with Fellow.
These kind of experiences ruin patients trust in medicine and make it harder to go back to doctors.
My mistake was not researching the place before I went to Minnesota. If I had I would have stayed away. It looks like the University of Washington's Medical Center could be better, in the meantime there is a neurological pain specialist close to me worth trying.

Philip

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Phillip: you need to keep looking until you find a proper doc who will earn your trust. He/she must be excellent in every way, not afraid to say ‘’ I don’t know’’, but willing to suggest alternatives and other specialists, makes you feel safe and respected. It might take some time, but keep looking, you and new doc are worth the effort.

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@shani

Phillip: you need to keep looking until you find a proper doc who will earn your trust. He/she must be excellent in every way, not afraid to say ‘’ I don’t know’’, but willing to suggest alternatives and other specialists, makes you feel safe and respected. It might take some time, but keep looking, you and new doc are worth the effort.

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Thanks for the suggestion.
I'm a few weeks a way from making another attempt in Portland. My primary care doctor and a local neurologist believe that OHSU's nerve center (who claims they will consult with any other OHSU specialists as needed in each case, if they do this I stand a good chance with them.)
The main reason for I'm making an attempt with them is because they have the ability to test for autoimmune issues that may have effected the nervous system. That seems important to look at right now because achalasia is both an autoimmune disease and a degenerative nerve disorder. (and it's my third major autoimmune disease) and considering the fact I took a series of powerful vaccines (the circumstances really left me no choice) with eight months of the second surgery this seems important.
Autoimmune reactions to vaccines do happen (I should stress I believe even thought he vaccines may have played a significant role in my current conditions, I don't believe I had much of choice but to take them because if a vaccine can do this, Covid would be far worse-possibly fatal) and that they reactions vary and can be confusing because there is often a delay, because what my immune system is reacting to is the build up of antibodies in my system.
Autoimmune disease have to be one of the most complex areas of medicine, and you're absolutely correct in suggesting that a doctor not willing to say "I don't know" is one to stay away from

Philip

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@shack76

Thanks for the suggestion.
I'm a few weeks a way from making another attempt in Portland. My primary care doctor and a local neurologist believe that OHSU's nerve center (who claims they will consult with any other OHSU specialists as needed in each case, if they do this I stand a good chance with them.)
The main reason for I'm making an attempt with them is because they have the ability to test for autoimmune issues that may have effected the nervous system. That seems important to look at right now because achalasia is both an autoimmune disease and a degenerative nerve disorder. (and it's my third major autoimmune disease) and considering the fact I took a series of powerful vaccines (the circumstances really left me no choice) with eight months of the second surgery this seems important.
Autoimmune reactions to vaccines do happen (I should stress I believe even thought he vaccines may have played a significant role in my current conditions, I don't believe I had much of choice but to take them because if a vaccine can do this, Covid would be far worse-possibly fatal) and that they reactions vary and can be confusing because there is often a delay, because what my immune system is reacting to is the build up of antibodies in my system.
Autoimmune disease have to be one of the most complex areas of medicine, and you're absolutely correct in suggesting that a doctor not willing to say "I don't know" is one to stay away from

Philip

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@shack76 diagnosing autoimmune diseases is so difficult for everyone!! When i first got so sick, no one knew what was going on. AD have such unseen symptoms or ones that make no sense. My husband kept calling the University hospital in the next city and we were finally connected with a neuro-immunologist, who knew exactly what was going on. I’ve been seeing her ever since. Look for medical centers of excellence or university teaching hospitals in your state. Find out if any of the neurologists are cross-trained or have a fellowship in immunology. They frequently treat MS patients. Keep trying and don’t give up!

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In reply to @yli130 "Thanks!" + (show)
@yli130

The test is called D dimer, it rules out pulmonary embolisms in the lungs

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@notgivingup17

I have symptoms of Fibromyalgia but no doctor has diagnosis me with it. I seen Rheumatologist, Muscular Skeletal Neurologist, Physiatrist, and my Internal Medicine doctor. I've had all kinds of blood test, EMG, and 2 Skin Biopsy to see if I have Small Fiber Neuropathy. Can you tell me what does your nerve pain feel like? I'm so frustrated from not knowing what is wrong with me because I know something is terribly wrong. I'm unable to exercise, clean or cook with out enormous nerve pain. I'm so sorry you are having such pain.

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Have you ruled out Sjogrens? I had a neuro presentation first and docs found it difficult to diagnose.

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@ellen307

Have no taste or smell from Covid in October now another major issue rectal prolapse
Waiting for surgery in mean time I m in a lot of pain.

Ellen307

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Ellen I am so sorry that you are in so much pain. I totally understand I have the whole ball of wax..I have the complete pelvic floor problem and it has become almost impossible to function some days. Are you having robotic surgery or regular surgery. I’m not sure that robotic is the right term.

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