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Autoimmune disease antibody attacking my brain and nervous system..

Posted by longislandswag23 @longislandswag23, May 24, 2023

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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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | May 27, 2023

@longislandswag23
Thank you for your service during 9/11.
My family and I lived on Long Island then. I saw it from my office window.
I know some illnesses are not covered under 9/11 which is sad because who knows what’s down the road. Your body was exposed to so much.
You have gotten a lot of good advice here. I think you should consider Mayo Clinic. They are amazing and don’t give up.
It would be great if your doctor could help you get started.
Personally, I think it’s 9/11 related.
Do you need information on how to contact Mayo?

REPLY
junetooth | @junetooth | May 28, 2023

First: Someone please help get this to long island wag

Second: Call Mayo. Ask for Dr Megan sullivan, a Rheumatologist. She is currently affiliated with Jacksonville Mayo and imminently Rochester. Mayo.

Third: question.
Did you have chicken pox as a child?

I currently am inpatient hospital (and rehabilitation facility) since 6 May with varicella zoster Encephalitis.

I did not present with typical shingles rash.

Admitted ER.

Admitted hospital. Treated with acyclovir 10 days iv drip.

Lumbar puncture did not yield enough spinal fluid. Complications like you.

MRI of cervical, thoracic, lumbar, sacral spine. Look at health of myelin sheath.

PCR+ test to look for varicella roster Encephalitis. Virus crossed blood brain barrier.

Presented over time with symptoms similar to what you describe. Headache. CNS and brain involvement similar to what you describe.

Rule this out.

REPLY
2 replies
junetooth | @junetooth | May 28, 2023

Rule out autoimmune Encephalitis.

Rule out viral roster Encephalitis.

PCR+ test needed.

REPLY
1 reply
grammy82 | @grammy82 | May 28, 2023
In reply to @junetooth "First: Someone please help get this to long island wag Second: Call Mayo. Ask for Dr..." + (show)
@junetooth

First: Someone please help get this to long island wag

Second: Call Mayo. Ask for Dr Megan sullivan, a Rheumatologist. She is currently affiliated with Jacksonville Mayo and imminently Rochester. Mayo.

Third: question.
Did you have chicken pox as a child?

I currently am inpatient hospital (and rehabilitation facility) since 6 May with varicella zoster Encephalitis.

I did not present with typical shingles rash.

Admitted ER.

Admitted hospital. Treated with acyclovir 10 days iv drip.

Lumbar puncture did not yield enough spinal fluid. Complications like you.

MRI of cervical, thoracic, lumbar, sacral spine. Look at health of myelin sheath.

PCR+ test to look for varicella roster Encephalitis. Virus crossed blood brain barrier.

Presented over time with symptoms similar to what you describe. Headache. CNS and brain involvement similar to what you describe.

Rule this out.

Jump to this post

@longislandswag23 I just read @junetooth wanted to make sure you saw her post. So, I'm mentioning you both.
My prayers to you @junetooth and @longislandswag23 !

REPLY
longislandswag23 | @longislandswag23 | May 28, 2023
In reply to @junetooth "First: Someone please help get this to long island wag Second: Call Mayo. Ask for Dr..." + (show)
@junetooth

First: Someone please help get this to long island wag

Second: Call Mayo. Ask for Dr Megan sullivan, a Rheumatologist. She is currently affiliated with Jacksonville Mayo and imminently Rochester. Mayo.

Third: question.
Did you have chicken pox as a child?

I currently am inpatient hospital (and rehabilitation facility) since 6 May with varicella zoster Encephalitis.

I did not present with typical shingles rash.

Admitted ER.

Admitted hospital. Treated with acyclovir 10 days iv drip.

Lumbar puncture did not yield enough spinal fluid. Complications like you.

MRI of cervical, thoracic, lumbar, sacral spine. Look at health of myelin sheath.

PCR+ test to look for varicella roster Encephalitis. Virus crossed blood brain barrier.

Presented over time with symptoms similar to what you describe. Headache. CNS and brain involvement similar to what you describe.

Rule this out.

Jump to this post

Hi just seen wow !! I'm sorry u going thru this I had chicken pox as a kid I believe.. Thk u so much for the info..I went to a rheumatologist out here and said blood work was normal..Thk u for your nice compliments..I'm deciding if mayo is what I'm gonna do I'm gathering info at this pt ..I went for a walk today in my town village my feet are on fire and head pounding..What are they saying it is btw?

REPLY
1 reply
longislandswag23 | @longislandswag23 | May 28, 2023
In reply to @junetooth "Rule out autoimmune Encephalitis. Rule out viral roster Encephalitis. PCR+ test needed." + (show)
@junetooth

Rule out autoimmune Encephalitis.

Rule out viral roster Encephalitis.

PCR+ test needed.

Jump to this post

They tested for like 30 diff things that would have came up..the only thing they saw was an antibody attacking brain and cns..

REPLY
2 replies
junetooth | @junetooth | May 28, 2023
In reply to @longislandswag23 "They tested for like 30 diff things that would have came up..the only thing they saw..." + (show)
@longislandswag23

They tested for like 30 diff things that would have came up..the only thing they saw was an antibody attacking brain and cns..

Jump to this post

Research autoimmune Encephalitis.

REPLY
mmhb1 | @mmhb1 | May 29, 2023
In reply to @longislandswag23 "They tested for like 30 diff things that would have came up..the only thing they saw..." + (show)
@longislandswag23

They tested for like 30 diff things that would have came up..the only thing they saw was an antibody attacking brain and cns..

Jump to this post

Could you share which antibody they found?

REPLY
longislandswag23 | @longislandswag23 | May 30, 2023

A myelin antibody is attacking nervous system.. I contacted mayo clinic.. they sent me a questionairre regarding neurology to see if I qualify.. the first step.. so I did start process to all! 🙏

REPLY
3 replies
grammy82 | @grammy82 | May 30, 2023
In reply to @longislandswag23 "A myelin antibody is attacking nervous system.. I contacted mayo clinic.. they sent me a questionairre..." + (show)
@longislandswag23

A myelin antibody is attacking nervous system.. I contacted mayo clinic.. they sent me a questionairre regarding neurology to see if I qualify.. the first step.. so I did start process to all! 🙏

Jump to this post

@longislandswag23 So glad~!💞💞

REPLY
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