Connect
Autoimmune diagnosing
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
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?
-
Like -
Helpful -
Hug
1 ReactionFLARE 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.
-
Like -
Helpful -
Hug
1 ReactionIt'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.
-
Like -
Helpful -
Hug
1 ReactionHas 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?
-
Like -
Helpful -
Hug
1 ReactionMy 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?
-
Like -
Helpful -
Hug
1 ReactionHello
I didn’t go to Mayo. I am in Canada. Thankyou for your info !
-
Like -
Helpful -
Hug
1 Reaction@sylvia67, I invite you to join the multiple myeloma discussions in the
- Blood Cancers & Disorders group https://connect.mayoclinic.org/group/blood-cancers-disorders/
-
Like -
Helpful -
Hug
2 ReactionsI think we can talk. For years I thought I had IBS. Yes, I have an eating disorder. The other day, as a result of the colonoscopy, he said that I might have microscopic colitis, but it was partial.
-
Like -
Helpful -
Hug
1 ReactionI have had collagenous colitis (of microscopic colitis) for about 6 years; I figure my celiac (14 years) just decided to travel some. No gluten, NSAIDs, and minimal legumes control it for me (good to keep a food log to see if there are triggers). I was on baby aspirin for 5 days due to long covid, and that was enough for a flare.
-
Like -
Helpful -
Hug
2 ReactionsI have had RA since 2012 and am on Remicade - an anti TNF biologic drug I receive by infusion every six weeks
18 mos ago I had acute onset of diarrhea that seemed to be related to Yersinia and that was treated with Bactrim, which helped initially but apparently contributed to c-Diff. Months of horror and living no further than a few feet from a toilet, I had a Colonoscopy and Collagenous Microscopic colitis was the diagnosis. A 3 month step-down regiment of the wonder drug Budesonide followed. I was asked to stop taking NSAIDs, PPIs, SSRIs, and reduced my statin to a low dosage. That has worked to keep recurrence at bay.
5 mos ago I had a surgery for an unrelated condition and the post surgical drugs - like narcotics - put me all out of whack. My doc and I are trying to right the ship without budesonide since he wants to Preserve use of that for more serious events.
And this is how I expect it will go. A period of calm and something unexpected throws a wrench in life. *sigh*
-
Like -
Helpful -
Hug
1 Reaction