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← Return to Pachymeningitis: Anyone else?
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Hello,
I was diagnosed with pachymeningitis about 4 years ago after having an MRI. I'm really hoping to find fellow patients with this very rare condition to share what they have tried and any treatments they may have had. In my case, they've tried doing a CT myelogram to see if there was a leak of my spinal fluid into my skull. The result was they could not find any evidence of a leak anywhere. I also had a lumbar puncture so they could check my spinal fluid for cancer or lyme disease. I was negative for both. I've had two neurologists who don't seem to know how to treat this or where to go from here (probably because of the extreme rarity of this disease). If anyone has any info on this regarding treatments or knows a neurologist who specializes in pachymeningitis (long shot I know, but just in case), please do share.
Thank you.
Replies to "Hello, I was diagnosed with pachymeningitis about 4 years ago after having an MRI. I'm really..."
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Hello @zacworld and welcome to Mayo Connect. With any rare disorder, it is always important to get a second opinion. This is especially true since you report that two neurologists are unable to offer you any treatment or help.
If you do seek a second opinion, it is probably a good idea to get that consultation from a multi-disciplinary health care facility like Mayo Clinic (appointment information can be found by following this link, http://mayocl.in/1mtmR63.)
If you cannot be seen at a Mayo facility, I would recommend contacting a university medical school. These types of facilities tend to be research-oriented, and you might have more opportunities to learn about this disorder and any treatment options that might be available or are in the process of developing.
Does this sound like a good option for you?