Multiple Autoimmune Diseases & Post Covid

I had Covid at the beginning I was almost on a respirator. It took me three months to recover. When the very first boosters were available I got them due to having ulcerative colitis. And all ways said if you have an autoimmune disease do not risk it. I started to decline shortly after that. I had to inhalers I had chronic diarrhea. I kept having to take medicine for it go on fob diet. Needless to say it was like a yo yo effect. Then my vitamin level went out of wack. I worked my job thru all of this. In January of 2022 I had omicron. My body took a decline I slept all the time. Lost my job for having to call in to much. The chronic diarrhea was still there. And at this point I was fed up. My GI doctor did a scope it came back normal. He could not figure out why I had the chronic diarrhea. In July it got worse I was falling all the time. Had to use a walker and in an out of the er my potassium levels were beyond low. They just pumped me full of it and sent me home. After the fourth time. I demanded to stay and would not budge on it. During this time I ended up not being able to walk. And all my vitamin levels went completely down to nothing. I was in the hospital for 2 1/2 weeks. I also lost 100 pounds within a year. They did everything all kinds of test first I thought I had MS then they thought it could be cancer. It took the third round of doctors to realize the chronic diarrhea was a big part of it. So I was put on a medication that did not stop it right away. But it helped in the long run. I also saw neurologist and they wanted to do an EMG but the person who did the test was on leave from there. I started to lose feeling in my legs and my arms, but the worst part is I had constant neuropathy in my hands and feet. Also, I couldn’t feel anything when I had to go to the bathroom. And since my vitamin levels went back up, I was released, then transferred to a rehab hospital. Where I had to learn how to walk again during this time, they put me on medication to help with neuropathy. But the constant sizzling and feelings of nails going through them. It was an intensive process with learning how to walk I was there for a month. When I got out the nueropothy was still horrible. I had to wait a month to see a neurologist. They did the EMG and heard a lot of O boys. I was told it was possibly sensory ganglionopathy. I was told there was no nerve activity in my lower arms, my lower legs feet and hands. The doctor told me once his report was done. He would have a definitive answer. And set me up for an appointment and told me he would be my doctor. When I went back for the test results, it was exactly what he thought it was. I started having equilibrium problems, and that was from the cause of having the sensory ganglionopathy.I don’t have the chronic diarrhea anymore. Thanks to the gastrologist I saw in the hospital I feel he saved my life. I am on permanent medication that completely stop the diarrhea. I am so grateful for that.Now I can’t walk on my own. I have to use a walker and a wheelchair, I am bedridden for the most part. I’m just trying to deal with all that sorry this is so long but I feel my story would help others. I will never get another booster shot for Covid. I am 46 years old at the peak of my career being an accountant went to college. My daughters are 20 and I feel horrible. One of them stays home with me, and the other helps out when they can. I just feel with their age and starting out in life they should be able to do what they want and live their life.
They don’t know much about my disease. It’s a very rare one. I also have problems with my heart and my bladder specialist for that coming up soon. The doctor my medical believes I have long Covid but there’s no way to test it, I have very supportive doctors. A lot of people don’t get that support. You guys have any questions I will be here to answer them. I know y’all struggle, and have an auto immune diseases It is never easy. I just wish I knew somebody with my disease and find a support group that can help me. With being disabled.

Sorry so late to respond. The vaccine got me too. I’m 2.5 years in. I’ve tried so hard to keep going. I haven’t responded to any treatment. It seems to make it worse. In the beginning, even when I was told this was all in my head, they questioned MS too. I have given up everything except work. But I’m only working because I can work at home. I’m self employed (accountant too) and just do what I can. If I had to go to an office, it wouldn’t happen. I said that I would never consider disability. But am rethinking it. I’m in so much pain despite pain meds that I don’t know how much longer I can pull it off. I originally found this group when I did a google search. Despite never being around people with the exception of doctors and always masking, I got covid earlier this year. Due to my poor health, they put me on paxlovid. The poor health from the vaccines - but for the 5 days that I was on it, my inflammation and pain reduced significantly. That is something that needs to be addressed. I found another person here who had the same response. I don’t don’t know how to manage being on the brink of disability and I have defied death twice. I’m tough, but there are no answers here. I’m sure you feel the same way. I decided that I would travel anywhere, somehow, to get help. I just don’t know where to go. Please let me know how you are doing now. Lisa

Sorry so late to respond. The vaccine got me too. I’m 2.5 years in. I’ve tried so hard to keep going. I haven’t responded to any treatment. It seems to make it worse. In the beginning, even when I was told this was all in my head, they questioned MS too. I have given up everything except work. But I’m only working because I can work at home. I’m self employed (accountant too) and just do what I can. If I had to go to an office, it wouldn’t happen. I said that I would never consider disability. But am rethinking it. I’m in so much pain despite pain meds that I don’t know how much longer I can pull it off. I originally found this group when I did a google search. Despite never being around people with the exception of doctors and always masking, I got covid earlier this year. Due to my poor health, they put me on paxlovid. The poor health from the vaccines - but for the 5 days that I was on it, my inflammation and pain reduced significantly. That is something that needs to be addressed. I found another person here who had the same response. I don’t don’t know how to manage being on the brink of disability and I have defied death twice. I’m tough, but there are no answers here. I’m sure you feel the same way. I decided that I would travel anywhere, somehow, to get help. I just don’t know where to go. Please let me know how you are doing now. Lisa

Sorry so late to respond. The vaccine got me too. I’m 2.5 years in. I’ve tried so hard to keep going. I haven’t responded to any treatment. It seems to make it worse. In the beginning, even when I was told this was all in my head, they questioned MS too. I have given up everything except work. But I’m only working because I can work at home. I’m self employed (accountant too) and just do what I can. If I had to go to an office, it wouldn’t happen. I said that I would never consider disability. But am rethinking it. I’m in so much pain despite pain meds that I don’t know how much longer I can pull it off. I originally found this group when I did a google search. Despite never being around people with the exception of doctors and always masking, I got covid earlier this year. Due to my poor health, they put me on paxlovid. The poor health from the vaccines - but for the 5 days that I was on it, my inflammation and pain reduced significantly. That is something that needs to be addressed. I found another person here who had the same response. I don’t don’t know how to manage being on the brink of disability and I have defied death twice. I’m tough, but there are no answers here. I’m sure you feel the same way. I decided that I would travel anywhere, somehow, to get help. I just don’t know where to go. Please let me know how you are doing now. Lisa

Hugs I tried for disability but did not have enough work credits. You have any questions on it let me know. I think we should chat more. It’s hard enough to go through this. And we have a sacred bond for being accountant goddesses.

Hugs I tried for disability but did not have enough work credits. You have any questions on it let me know. I think we should chat more. It’s hard enough to go through this. And we have a sacred bond for being accountant goddesses.

Sorry so late to respond. The vaccine got me too. I’m 2.5 years in. I’ve tried so hard to keep going. I haven’t responded to any treatment. It seems to make it worse. In the beginning, even when I was told this was all in my head, they questioned MS too. I have given up everything except work. But I’m only working because I can work at home. I’m self employed (accountant too) and just do what I can. If I had to go to an office, it wouldn’t happen. I said that I would never consider disability. But am rethinking it. I’m in so much pain despite pain meds that I don’t know how much longer I can pull it off. I originally found this group when I did a google search. Despite never being around people with the exception of doctors and always masking, I got covid earlier this year. Due to my poor health, they put me on paxlovid. The poor health from the vaccines - but for the 5 days that I was on it, my inflammation and pain reduced significantly. That is something that needs to be addressed. I found another person here who had the same response. I don’t don’t know how to manage being on the brink of disability and I have defied death twice. I’m tough, but there are no answers here. I’m sure you feel the same way. I decided that I would travel anywhere, somehow, to get help. I just don’t know where to go. Please let me know how you are doing now. Lisa

Hi @shani, I’d like to add my welcome. You may also be interested in these related discussions:
- Erythema Nodosum https://connect.mayoclinic.org/discussion/erythema-nodosum/
- Recently diagnosed with Multiple sclerosis https://connect.mayoclinic.org/discussion/recently-diagnosed-with-multiple-sclerosis/
- Sarcoidosis Treatment: Tips for an effective path to better health https://connect.mayoclinic.org/discussion/sarcoidosis-treatment/
- Can Hashimoto’s disease cause dry mouth? https://connect.mayoclinic.org/discussion/hashimotos-and-dry-mouth/

Living with multiple automimmune conditions, I’m confident you would have tips and thoughts to offer others in these discussions.

Sorry so late to respond. The vaccine got me too. I’m 2.5 years in. I’ve tried so hard to keep going. I haven’t responded to any treatment. It seems to make it worse. In the beginning, even when I was told this was all in my head, they questioned MS too. I have given up everything except work. But I’m only working because I can work at home. I’m self employed (accountant too) and just do what I can. If I had to go to an office, it wouldn’t happen. I said that I would never consider disability. But am rethinking it. I’m in so much pain despite pain meds that I don’t know how much longer I can pull it off. I originally found this group when I did a google search. Despite never being around people with the exception of doctors and always masking, I got covid earlier this year. Due to my poor health, they put me on paxlovid. The poor health from the vaccines - but for the 5 days that I was on it, my inflammation and pain reduced significantly. That is something that needs to be addressed. I found another person here who had the same response. I don’t don’t know how to manage being on the brink of disability and I have defied death twice. I’m tough, but there are no answers here. I’m sure you feel the same way. I decided that I would travel anywhere, somehow, to get help. I just don’t know where to go. Please let me know how you are doing now. Lisa