Connect
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
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
My husband also had a horrible reaction to the 5 days infusion of steroids ...He had no idea who i was when it first happened almost 3 yrs ago ..just wish i knew what to expect w his disease ,but being so rare and new very hard to find much literature
-
Like -
Helpful -
Hug
1 ReactionGod Bless all who are batteling and their families ..All in Gods hands what his plans are for us all ..keep the faith !!!
-
Like -
Helpful -
Hug
2 ReactionsNot too happy got denied by mayo clinic..altho I will follow up with doc on li for ivig treatment I really dnt know which way to go now..
-
Like -
Helpful -
Hug
1 Reaction@longislandswag23
I'm so surprised....what reason was given? I didn't think that happened...that they would deny you.💞
Maybe one of the mentors could help in explaining.
@longislandswag23
Since you live on Long Island I would also consider Lyme Encephalitis.
Maybe check with your doctor if that has been considered.
Columbia University also have superb Neurology department.
-
Like -
Helpful -
Hug
2 ReactionsDid they tell you the name of the antibody? Or did they do the tests to identify it? Very important. Not all docs know how to do this...
@longislandswag23 I am sorry to hear you were denied at Mayo Clinic. Which department did you attempt an appointment with? Was it with neurology like another one of your posts said? Perhaps the paperwork they had you fill out showed to them that a neurologist is not the best fit for you. I am not sure they would automatically Can you see about getting in to a rheumatologist or internist?
How are you feeling today?
Ginger
-
Like -
Helpful -
Hug
2 ReactionsInternational Autoimmune Encephalitis Society
iaes@autoimmune-encephalitis.org
Suggest you check this group out.
-
Like -
Helpful -
Hug
7 ReactionsQuestion: I have neuropathy probably cause by lupus. Would this group me? TIA, Pat.