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cgrammie2 (@cgrammie2)

pachymeningitis

Brain & Nervous System | Last Active: Jun 20 12:01pm | Replies (85)

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@gigirambo

Yes, Was diagnosed first of April. Had been suffering with headaches that became more and more severe. My internist prescribed a CT scan and immediately sent me to the ER. A lumbar puncture was done and I was admitted into the hospital for more testing. Had MRIs – with & without contrast- and was started on antiviral meds as they weren't sure what my diagnosis might be. After release from the hospital, I was prescribed steroids for approximately 2 weeks and referred to Emory Hospital in Atlanta, Ga for further testing. Met with a Neurologist there that wanted all MRIs done once again….and concurs with the original diagnosis of Pachymeningitis.
Headaches have lessened in severity and manageable with OTC meds ( but can't lean over as pain becomes severe) I am to return to Emory in 3 months to have MRIs repeated. My question is what should I be doing to lessen the chance of this getting worse again and if diet, supplements, etc might help in treatment? I understand that there is not much info on this condition, but feeling like I'm on a roller coaster. Dr.s have told me to take it easy and rest over the next several months and avoid stress as much as possible. Trying !

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Replies to "Yes, Was diagnosed first of April. Had been suffering with headaches that became more and more..."

@gigirambo how are you feeling? Are your B cells very high? For me the steroids helped but the rituximab Infusions x4 has really reduced the inflammation in the dura. So far I’m doing okay and next MRI will be in January. My neurologist says I may not need another rituximab infusion depending on the results and how I’m feeling. I still get occasional shooting pains in my face and eye area but last a few seconds. My eyes are very dry so I use drops a few times per day. So far doing well. Let me know if you have any other specific questions.

Did anyone have a high white blood count

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