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cgrammie2 (@cgrammie2)

pachymeningitis

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

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@lisalucier

A number of you have posted about your experiences with pachymeningitis, and it would be great to hear an update from you all. I think your responses will benefit many members in this discussion.

@ewebster1981 – how are you doing? Did the migraine subside you had last week?

@tracyb – are you still in the wait and see mode you mentioned previously? How are you doing?

@megmor – are you still experiencing some of the improvements you saw with the steroid treatment?

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Replies to "A number of you have posted about your experiences with pachymeningitis, and it would be great..."

Still in Wait and See mode. Having MRIs every July to check for progression. Next MRI is July, 2019. Regarding symptoms, my mild 24/7 headache may be getting a little worse, my eyes feel "heavy" and my stiff sore neck is worse (although I do have facet joint disease which may be a problem with the neck). Will be interesting to see if my next MRI shows progression. IMO, I don't feel as well lately, but my symptoms still don't warrant steroids, etc, but we will see when I meet with my neurologist. If there is progression, that could change my mind about treatment.

Hi all I hope you are all getting on ok .I have managed to taper off steroids in April ,so i have just been on mycophnooate since ,so my head made a significant improvement from the starting point of treatment at the begining of Jan 2018, the next MRI in April 4 months after starting showed massive improvement ,but not complete resolution.I have had 4 MRIs since and it has remained stable ,I've had two bouts of headaches and face pain both lasting 6 weeks ish and then it seems to resolve and the scans always say no significant change so who knows what the headaches are about ,so that's me stable ,I'll take that ! I Would be keen to hear how you are all getting on Meg

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