Multiple Autoimmune Diseases & Post Covid

Thanks for your reply, but I seem to have exhausted what gastroenterologist can do at this point. What I really need at this point is a neurogastroenterologist, but I think the closest to me is at Stanford.

Glad you found that out! Best of luck on the journey. Finding the right sort of doctor can be a challenge, sometimes. For my issues, I find good relief with advice from webmd GERD triggers. There might be something useful there.

I have Myositis for six years approx. I am now losing my teeth which is devastating ..predisone dose is ten mg for about a year. Doses were flexible before then. Also suffering hair loss and sight of one eye. Help!

@shack76 Finding the correct type of physician can be so difficult and frustrating. You say that the closest hospital , or one that has a neurogastroenterologist, is Stanford. Wouldn’t it be worth getting an appointment?

I also have multiple autoimmune diseases (lupus/lupus nephritis, Hashimotos thyroiditis, Sjogren's syndrome) and post Covid (nov 2020). I am struggling a lot right now. Just want others to know that you're not alone. I hope we can help each other get through this and to a healthier future.

@lemmy2022 I’m so sorry that I didn’t see you posting sooner. You’ve had myositis for about 10 years and are taking prednisone. Are you taking any other medications for the myositis? It seems like I’m going to ask you lots of questions, but id like to get to know you and your situation better. Is that okay? What types of physicians are monitoring your disease? An ophthalmologist, a rheumatologist, an endocrinologist and a dermatologist? Ive been on prednisone for about 6 years. I started at 60 mg and have slowly come down to 5 mg. Ive been followed closely because i developed cataracts and osteoporosis from the prednisone.
I would love to see you get some proper care..Can you ask your doctor for some appropriate referrals?

Thank you for your concern. I am a broken woman with this curse I call it. I live in Nfld Canada and fortunate enough to have the best medical care there is offered. Have most most of my hair twice, cataracts, glocoma, eye implants now sight gone left eye. Suffered a stroke a year ago so confined wheelchair. Now my teeth are loosening from my gums, my dentist cemented them so lasting for now. That was for my four front crowns.

I am so tired and feel so sad. Cannot enjoy my family much anymore and feel left out a lot. They try to include me but I don’t last long.

Predisone is keeping me alive I guess and my next fear is difficulty in swallowing. That’s part of disease also.
My Doctor is a professor oh rheumatologiy at a our local University. I trust his care.

@lemmy2022 I’m glad to hear that you have good doctors and are getting good care. Autoimmune diseases are so difficult to live with and to manage. And covid has made it even more difficult with the forced isolation.. you may want to think about finding a therapist to talk with. It helped me immensely. Many therapists do telephone consults.
And you might like the discussions in the Aging Well group. I included the link. Maybe @nanette2022 could welcome you when you post there.
https://connect.mayoclinic.org/group/aging-well/
You said that you are in a wheelchair due to a stroke—do you have someone to help you or are you able to care for your own needs?

I am about two weeks out from first covid symptoms--I am boosted. Still have extreme lethargy, not too much inflammation otherwise, though. I am trying to make myself drink more water and to be sure I eat enough calories in a day. Short walks outside as I am still rather breathless. I used an inhaler through the worst 4 days of illness. I do have Lupus

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.