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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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@longislandswag23
I believe you have taken a huge leap towards help.
Neurology, rheumatology they will build the team you need.
Get a notebook.
Record was h specialty and provider they bring on board including full name first (middle if known), last, phone and fax #.
Very important for getting medical records shared.
Get release of records forms filled out. Mayo will help you.
They are going to do their own workup .
But the history will help them.
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4 ReactionsThank you I figured they would want the past records . Provider they bring on board? Should I tell my doc I'm seeing now?
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1 ReactionThat a yes?
I need to step back focus on my own acute inpatient rehabilitation . Godspeed
Defer to others in group to guide you from here
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2 ReactionsThks so much for your help and best of luck to u 🙏💕
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1 Reaction@longislandswag23 It’s great that you’ve made some progress in solving your puzzle! Before you put all your hopes on Mayo Clinic, remember that there are great possibilities closer to home. 1. Go to this website and then call the number. They should be able to give you the names of rheumatologists in your area. https://rarediseases.info.nih.gov/contact/
2. You can also look up this list of 10 best hospitals for rheumatology and see what is near you.
https://health.usnews.com/best-hospitals/rankings/rheumatology
3. Also, check with your insurance companies to find out what doctors/hospitals they cover.
I join everyone here in wishing you luck! Will you be sure to keep us informed?
I was recently diagnosed with Distal Acquired Demyelinating Symmetric Neuropathy with anti-MAG antibodies (DADS-M). It was quite a process nailing it down. I believe it came from Agent Orange or a defoliant used in the Northern Training Area of Okinawa. Your 911 exposure could be similar. It is being treated with Infusions of Reteximab (sp). So far the treatments have only brought minor improvement.
I was diagnosed at Stanford University here in California.
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3 ReactionsWoww!!🤯🤯 Blessings to u🙏🙏 thks for info..how long did it take to diagnosis.. I def wasn't exposed to agent orange but of course other toxic crap..
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1 ReactionThe process took about 3 months. First a evaluation appointment with blood draws. Then a Nerve Conduction test appointment with another blood draw. That blood draw was sent to a special lab in Saint Louis which identified the actual antibody. My antibody attacks the insulation around my nerves. Put simply, signals from my brain short out on their way to the involved muscle. My first step was researching the symptoms of Distal Acquired Demyelinating Symmetric Neuropathy. I had 90% of them. This prompted me to find the specialist at Stanford. You should be able to find the symptoms on line by doing a search that includes the word “symptoms” Distal Acquired Demyelinating Symmetric Neuropathy.
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5 ReactionsThk u so much I'll look into this and let mayo clinic now.. How are u now? Can u walk?
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