Autoimmune disease antibody attacking my brain and nervous system..
Has anyone had issues like mine.. 7 months ago really bad headaches weakness fatigue .. Went to gp rheumatologist Neuro all did blood work said it was normal.. Neuro I went to in long island dealt with stroke and brain aneurisyms.. so he referred me to another Neuro.. He said I must say people come to me I'm the weird ishh magnet.. After numerous blood tests they found an antibody attacking my nervous system and brain they said.. They then did 2 lumbar punctures the first I almost passed out ..The second they did get the fluid after waiting over another month or so the results came back normal. Ive had these symptoms for 7 months now and is now affecting my whole body I am walking with a cane I am 48 yrs old. As my feet legs are on fire constantly. It's def tough.. I asked the doc yest what's it called he said Sally tim Bob.. Idk he said I said u dnt know? He said no .But he has a plan in place.. wants me to go for ivig treatment the next 6 months to see if it helps walking. And up my meds I'm taking topistrate and duloxetrine..Someone told me today to see about mayo clinic they can solve anything.. I dnt have a name for the condition tho. Which is strange. I am also a 9/11 survivor NYPD and have obstructive lung disease and are in wtc program. Autoimmune is not covered under 9/11 which is sad this is after I had back surgery , 3 yrs ago my back is fine.But it's crazy the cane is back.. Has anyone gone thru this would mayo be a good fit im trying to weigh all options thks. Brian
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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:
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
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!