Autoimmune diseases

So sorry for your troubles. Easier said than done, try to focus on one positive thing and have gratitude for that. It just gives you at least a moment of peace. It is so important to remember the positive and so difficult to do so when your body is in such constant chaos. Wishing you some peace and comfort.

@debbieann18 Welcome to Mayo Clinic Connect! You don’t feel so cheery, do you? You’ve come to the right place to cry and really let your feelings out. We’ve all done that. Sometimes I still do it (cry and have a small hissy fit)
One thing I will suggest is that you find a good therapist. They can be an invaluable resource for you. Check with a mental health center in your area and let them know what you need. You may have to try 2 or 3 before you find the right one. If you are over 65y with Medicare, your mental health visits will be covered. I’ve been doing so much better since I found a therapist!
Just take each day as it comes along. Enlist a friend to help you. Take small steps, one at a time.
Can you tell me 1 thing you will do tomorrow?

We have all been where you are and truly feel your pain. No one does upside down quite like us. The idea of a therapist is a good one. Also, I would ask if you have a good rheumatologist?

Yes, as we age, things start falling apart. Read as much as you can about autoimmune illness and find good specialists to care for you. I have found that some physicians or PAs are not competent enough to deal with autoimmune disease. When you find someone you can trust, stay with that person, explore all the options available (and there are many) and stop worrying ! Stress will cause you to feel worse. Blessings to you.

I have been fighting 2 autoimmune diseases since age 10. ( I’m 60 now) and now mass cell activation +5 bulging disc, 2 herniating and nerve impingement. I have found a holistic doctor that is treating my immune system and he has helped me more than any MD has in the past 10 years. So ask around and educate yourself and see if there’s a good holistic position close to you that might be able to help you.

Which ones do you have?

From CUAnchutz:
This brings real hope to all current and future autoimmune patients
Amanda Piquet, MD, of #CUAnschutz wants people with autoimmune neurological disorders to know that they aren’t alone. Through patient care, research and collaboration, she dreams to improve life for everyone impacted by the autoimmune disorders that affect the brain and spinal cord.

In 2024, the Céline Dion Foundation gifted $2 million to CU Anschutz to advance autoimmune neurological research in gratitude for the care the superstar has received from Dr. Piquet throughout her journey with Stiff Person Syndrome (SPS).

The duo sat down together to discuss what the gift means for the future of SPS and other related neurological diseases. Video not available

My son was diagnosed with autoimmune encephalitis 27 months ago. He is an engineer and has tried IVIG, RITUXMAB, PLASMA EXCHANGE, high dose of Steriods and Thaimine. He had no thaimine , never walked for 27 months, now he is on once a month for six months of Cytoxan infusion, on his 5th treatment, his legs are weaker, Anyone with similiar experience, I am desperate to know if I am alone. Pam

@can9 I am so sorry to hear about you son. It must be so hard for you. Does your son have a rheumatologist who is following his care? Who is managing his care?
I, too, had the 7 rounds of cytoxan. Not a very nice drug, but it did knock out enough of the lymphocytes that were attacking my brain, Then I started another medication called mychophenalate, which I’m still on.
I will check for other members with a similar diagnosis and give you some contact info. Here is a discussion I found.
https://connect.mayoclinic.org/discussion/seizures-due-to-autoimmune-encephalitis/

I can only say that you have come to the right place and you are not alone. No, I do not have the disease you mention (but it sounds pretty awful) but I do have several others. I even have breast cancer and obviously startled my surgeon when I wasn't fearful. They've got so many protocols for it you hardly have to think. I had things that had no name and didn't know what specialist to seek out. So, stay with us and we will send good thoughts to you and your son.