Autoimmune disease antibody attacking my brain and nervous system..

First of all...my gratitude to you for your service that day...how many of you have suffered, it breaks my heart.
To you, @longislandswag23, I say please go to the Mayo Clinic. They saved my life in 1985 and if I didn't know what was going on with me, I'd be back there in a heartbeat. It is the best, and they WILL give you a diagnosis, explanation, thorough testing and get you set on a treatment. You are so young, it is a must for you to have the best quality of life possible...really anybody should. I'm 82 now and my wild dancing days are memories. You have a lot of time ahead of you, and by all means, go to Mayo, it is always a good fit.
About 10 years ago I had a neighbor in his 30s who just was ill and could not seem to get better no matter how many specialists he went to. He went to Mayo and he had a rare kidney disease, I believe there were 36 known cases. They found it, set him on the right path, and coordinated care with a local nephrologist. He still goes for checks at Mayo routinely...on his motorcycle, he rides to Minnesota from Indiana~!! He is greatly improved.
You can have autoimmune with normal lab work, just saying. Getting you well is their priority...my best to you💞

@longislandswag23. You sound totally frustrated with doctors, testing and no diagnosis. Autoimmune diseases can be very nebulous with symptoms that come and go. I went to the ER multiple times before I got a diagnosis. At that point I couldn’t even stand and walk without major assistance. There are a couple of things I can recommend to you. https://autoimmune.org/resource-center/diagnosis-tips/ This is a website that helps you organize yourself before a doctor visit
https://rarediseases.info.nih.gov/contact/ This site—Genetic and Rare Diseases—can help you find a knowledgeable doctor in your area. Also, read through the other autoimmune discussions. Someone may have very similar symptoms and all members are anxious and willing to help you!
Please let me know, by the weekend, if you have any success in your research. Will you do that?

Thk u so much well the blood work wasn't normal.. They do know it's an autoimmune they dnt know which one..I definitely am considering it..Trying to get as much as info and God bless you🙏

Should I ask the doc that I'm dealing with if he can help? To go further? I just dnt know what different docs are going to do different I'm exhausted at this point I'm definitely gathering info from other members..

Bless you, @longislandswag23 I sure hope you go because you need to get a proper diagnosis and treatment....then you feel better. Start the road to remission and better health. Stay in touch.💞

I haven’t experienced what you have. But I had antibodies attacking my thyroid. My doctor put me on LDN - Low Dose Naltrexone. If you research it, you will find it is being used for other diseases beyond its original purpose which was I believe alcoholism and opioid addiction.
This website I found is informative:
weillcornell.org.
Wishing you the best in finding an answer and solution.

To @longislandswag23: I can't even imagine what you have been through- and I have a pretty good imagination. Yes to the Mayo Clinic if you can. And I certainly second the use of LDN for help normalize your immune system. Please read about it first. I would say that its depths have not been plumbed yet.
Also, I wanted to share something that I read in the Natural Medicine Journal. There was a small single blind study done on people with Long Covid and it found that twice a day supplimentation with 1.66 grams of L-arginine and 500mgs of liposomal vitamin C greatly increased excercise tolerance in a month. People definently felt better. This is for every one to think about.

@longislandswag23 You probably came thru 911 much stronger and this is just a new challenge for you. You did that and I know you can do this. If your local doctors aren’t helping, you want to go to a comprehensive medical center or a university hospital. I know NYC and Long Island have lots of good hospitals. Just call one and tell them that you are very sick and need some help. That’s what I had to do. When I was extremely sick and the local doctors didn’t know what to do, my husband started calling the university medical center and we were finally connected with the neurology clinic.. You can also call GARD, the genetic are rare diseases organization for help finding a doctor. Look at my previous posting and you will find the link. Please call tomorrow!
Will you call and start meeting this challenge? Let me know what you find out!

This doctor is a Neuro with nyu one of the best

Hi longislandswag23,
I'm sorry that I can't give any medical suggestions, but I feel compelled to join all of the other posters in wishing you well.
Good luck! And know that all of the people posting here are with you in spirit!