Autoimmune diagnosing

Posted by bunnysammy @bunnysammy, Jun 30, 2018

Hi, I'm just a bit frustrated and wanted to talk to some people going through the same things. I thought I had Celiac disease but because I really don't like going to the doctors I avoided getting a for sure diagnosis and went gluten free. It's definitely helped with a lot of my symptoms. I got a blood test a few months ago for my doctor. My platelet count was extremely low as well as my iron and b12. She told me it looked like something autoimmune but I didn't know what that meant and she didn't press me to see other doctors about it. She also mentioned something seemed strange with my bone marrow. I didn't think anything of it. I thought the vitamins she suggested were all I needed. Well in the past couple months I've been in more pain than usual. Sharp chest pains, stiff and painful joints and I ache everyday. I've also had a persistent low grade fever. I get sharp pains in my hands too. I feel super weak and fatigued daily which I've always had bouts of but for awhile being gluten free helped. I can't keep up with my boyfriend when we go on walks anymore. My pain keeps me up at night. I have a few other symptoms but these are the most frustrating ones. Does anyone have any idea what this could be? I set up a doctors appointment but it'll be another month till they can see me.

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

@rexsan20

what is naturopathic medicine? I have Sjogren

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@rexsan20 I saw your question about naturopathic medicine and decided that I’d best look it up. I only have minimal knowledge of it.
https://www.webmd.com/balance/guide/what-is-naturopathic-medicine
Are you wondering if naturopathic medicine would help with your sjogren’s disease?

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With your symptoms you may be better to ask your Dr to refer you to an endocrinologist. I have had Addison’s disease for 20 years which is an autoimmune problem and my Dr referred me to an endocrinologist who made the diagnosis. There are many autoimmune diseases that could display some of your symptoms. I hope you seek some help.

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@ginnywilson

With your symptoms you may be better to ask your Dr to refer you to an endocrinologist. I have had Addison’s disease for 20 years which is an autoimmune problem and my Dr referred me to an endocrinologist who made the diagnosis. There are many autoimmune diseases that could display some of your symptoms. I hope you seek some help.

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Hello @ginnywilson, Welcome to Connect. It sounds like you had a great care team and doctor who helped with your diagnosis. Thank you for sharing your experience. You mentioned having Addison's disease for 20 years. There is an older discussion from 2018 in case you are looking for information on Addison's — Addison's Disease: Tired of being tired: https://connect.mayoclinic.org/discussion/tired-of-being-tired/

Do you mind sharing what brought you to Connect or if you are looking for specific information?

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FLARE AFTER COVID SHOTS?? I want to ask whether anyone else had an arthritic flare after the two covid injections? My flare-up developed somewhat gradually–I had been gardening a little too much and just thought I overdid it when the pain began following Pfizer shot number 1. But, following the second injection, I began to have knife-stabbing pain in some touchy joints, plus pain/stiffness in places that never hurt before. I am pretty sure I had an auto-immune reaction, but such organizations as national arthritis foundations, etc., have minimized the problem or simply skirted any risk. Every doctor I asked said no, I did NOT have a flare. However, even my rheumatologist hinted that'some patients' had 'had trouble' with the other drug company's inoculations. I feel now that I'm always stiff and my joints will never be where they were before the injections.

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@patsing78

FLARE AFTER COVID SHOTS?? I want to ask whether anyone else had an arthritic flare after the two covid injections? My flare-up developed somewhat gradually–I had been gardening a little too much and just thought I overdid it when the pain began following Pfizer shot number 1. But, following the second injection, I began to have knife-stabbing pain in some touchy joints, plus pain/stiffness in places that never hurt before. I am pretty sure I had an auto-immune reaction, but such organizations as national arthritis foundations, etc., have minimized the problem or simply skirted any risk. Every doctor I asked said no, I did NOT have a flare. However, even my rheumatologist hinted that'some patients' had 'had trouble' with the other drug company's inoculations. I feel now that I'm always stiff and my joints will never be where they were before the injections.

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It's interesting that you said that. I am still undiagnosed but believe I
have some sort of genetic joint autoimmune disorder. And ever since I got
covid vaccines. Mederma. I have been in excruciating pain. Joints that
weren't affected before are affected now. And the joints that were affected
are ten times worse.

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Has anyone had bortezombib for myeloma maintenance ?
I did 4 months chemo of Dex/cyclophosphamide / bortezombib. Then did SCT in Jan/22. Told me I should go on mntce every 2 weeks of bortezombib with my chromosomes?? Anyone else do this for myeloma mntce?

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@sylvia67

Has anyone had bortezombib for myeloma maintenance ?
I did 4 months chemo of Dex/cyclophosphamide / bortezombib. Then did SCT in Jan/22. Told me I should go on mntce every 2 weeks of bortezombib with my chromosomes?? Anyone else do this for myeloma mntce?

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My husband took this same induction therapy the ASCT. Afterwards there was a very frank conversation about reproductive health and the decision went revlomid instead. He took it for two years and then had two years treatment free before then taking Ninlaro ,revlomid and dex for a year. He will be going on some form of treatment again in a couple months after another two years of treatment free time.
Out of curiosity did you get your transplant at Mayo? Have you looked at the myeloma conversations on connect?

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@auntieoakley

My husband took this same induction therapy the ASCT. Afterwards there was a very frank conversation about reproductive health and the decision went revlomid instead. He took it for two years and then had two years treatment free before then taking Ninlaro ,revlomid and dex for a year. He will be going on some form of treatment again in a couple months after another two years of treatment free time.
Out of curiosity did you get your transplant at Mayo? Have you looked at the myeloma conversations on connect?

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Hello
I didn’t go to Mayo. I am in Canada. Thankyou for your info !

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@sylvia67

Has anyone had bortezombib for myeloma maintenance ?
I did 4 months chemo of Dex/cyclophosphamide / bortezombib. Then did SCT in Jan/22. Told me I should go on mntce every 2 weeks of bortezombib with my chromosomes?? Anyone else do this for myeloma mntce?

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@sylvia67, I invite you to join the multiple myeloma discussions in the
– Blood Cancers & Disorders group https://connect.mayoclinic.org/group/blood-cancers-disorders/

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