rare disease day

soccero

how come chiari doesnt seem to be included

molly

Anyone have any experience with ICP bolt monitor testing?

KerriC1

Hi everyone. Sorry it’s been a while. Things have been hectic. I even forgot my login so if there’s duplicates I’m sorry! Anyway I’m s...

Anyone has had these strange symptoms as well? Chiari Malformation...

Dedekinns

Hi, I am new to this. I was diagnosed with Chari back in 2019 and the neuro doctor I had thought nothing of it. My ENT was the one...

Question about Ketamine infusions and muscle tightness

ChiariWolf

Firstly, no I’ve not been tested for any connective tissue disorders. It seems around here Doctors still don’t have open minds about CM. ...

Need Advice

Y_eve

Hi. I'm new here and have been reading some of the posts. I have a similar situation as some of the other posters. I have been having sym...

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soccero

i see what ur saying but i think ms is too and ms pretty well known
molly

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COMMUNITY LEADER

selmaS

hmmmmm, but it is a rare disorder that is no longer rare.....????

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pamk5

Yes Molly, I believe you are right.

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soccero

thanks for ur response. isnt chiari part of NORD?
molly

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COMMUNITY LEADER

selmaS

Hi Molly...Not sure Chiari is a disease.....it is more a condition......but that is JMHO : )

"selma"

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