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cgrammie2 (@cgrammie2)

pachymeningitis

Brain & Nervous System | Last Active: Oct 6, 2021 | Replies (82)

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@mern

I am being worked up for pachymeningitis. It was diagnosed by MRI while looking for the cause of hearing loss. It is complicated by also having Rheumtoid arthritis. I have constant pressure and headache. My neurologist is aggressively looking for the cause. He has had one other patient who unlike me was asymptomatic. I am awaiting results of CTs and MRIs. My next step is to consult a rheumatologist at a major university teaching/research hospital. I have no recommendations at yet. I would like to stay in contact with you. This is a lonely journey

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Replies to "I am being worked up for pachymeningitis. It was diagnosed by MRI while looking for the..."

We are here to talk and hopefully get some ideas about treatments.If you would like we can exchange phone numbers and talk via phone! Private message me. we are on central time… call and we can chat about our journeys!

Merry Christmas I would like to hear more about this condition and some successful treatments.
I’ve been going to multiple doctors, tried to go back to work but I feel like this journey is coming to an end.

yes it is lonely and they know so little about this disease. I WAS I could share my phone number and name with you

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