We live in Tennessee and my husband has been dia, with a very rare disease called pachy meningitis he is being treated in Nash. Tn. took a long time to get a name for his diease most people and Doctors haven’t ever heard of it he is looking for someone to share stories and treatments with being is has no clinical studies it is so rare! has anyone ever heard or know someone that would be willing to share information about this disease even if you are a professional neuro doctor is ok!!!
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Hello @cheerfulheart and welcome to Mayo Clinic Connect. Identifying what came first is certainly complicated in your case. I searched for other members who have mentioned having had a VP shunt and came across members @cynaburst @duke77 and @thegoodwife who may be able to come back and share their experiences with you specific to the shunt.
It sounds like you may have suspicions about the likelihood of the shunt causing your pachymenengitis. Have you considered a second opinion?
No history of shunt. Idiopathic patchy meningitis. Horrible headache for months – blindness -partially blind- pain legs difficult with temperature control. 8 months later after multiple lumbar punctures, pet scans, specialized labs and MRI’s to include brain biopsy including dura matter. This is the diagnosis. Tx 80 msg prednisone. IVG therapy. Just started bouncing steroids IV. 1250mgs 3 days and once week after for 5 weeks. Cannot – see. Pain awful. History of transplant 12 years ago AML. Female donor.
New to Forum. I was a 100% service connected Veteran before this all started. Diagnosed with Myasthenia Gravis in 2021, and Pachymenengitis in Jan 2022 after Open Brain Biopsy at University of Pennsylvania Hospital. Had horrible Headache and R Eye Pain for about a year. After the biopsy I went to Neuro Intensive care and Had 1000 Mg of IV steroid daily x 3 days. Pain has been gone for about 5 months. I have some cognitive problems- pulling up words, correctly taking my 25 meds keeping appointments. I have balance and eyesight problems. Have Physical Therapy twice weekly. I may be the only person with both Myasthenia Gravis and Pachymenengitis. Great care from The Philadelphia VA. I have had 2 Rituxin IV's and am waiting to see how that works out.
Hello @77smith77 and welcome to Mayo Clinic Connect. You've certainly had quite the last couple of years with these two diagnosis. I am glad to read your pain is gone, however.
When did you have your two Rituxin IV's?
May12 & 26 2022 at the Philadelphia VA.
Hey! I had a grand mal seizure 2 years ago and spent 4 weeks in hospital. I lost the sight in my right eye from swelling in my optic nerve. A suspected anca vasculitis had inflamed behind my eye and the dura of my brain. A brain biopsy revealed hypertrophic pachymenigitis and I was started on large doses of prednisone. Swelling went down in my eye and sight returned but had terrible double vision for about 4 months. This diminished and normal now. They initially wanted to have me do Rituximab but my insurance wouldn’t cover(BCBS) so they kept me extended on Prednisone for about 6 months , tapering down and now I am on 1000mg of Mycophenolate daily for a little over a year. Vision pretty good now though Prednisone did a number on my body cataracts, torn rotator cuff. No more seizure and gaining back some of the 40 lbs I had lost. I deal with crushing fatigue that has no rhyme or reason on how it comes on me. I also have some balance issues that come with fatigue. I am a personal trainer and it has been difficult to try and work my way back. Hoping at first of year to be able to cut back on the mycophenolate.
Hi, sorry to hear you have Hypertrophic pachymeningitis. Your story sounds very familiar, although i have been lucky not to have any seizures ( touch wood ) .Like you i had steroids , it ended up being for 18mths , and recovery from steroids was hard , I had no power !! I still take mycophenolate 1500mg daily ( since 2018) my scans massivly improved in the beginning and each scan has remained stable ever since but we have never managed to completely get rid ! .For me it definitely follows a relapsing/ remitting course- i will have days or weeks of headaches/face stiffness and blurred vision balance etc ( quite mild compared to what it was ) and then it seems to resolve .At the moment its playing up , been a few weeks now ,i have had pressure in my mastoid area and sore face ,had another mri week or so ago so hopefully get some news .At my last appointment we also revisited my bloods to see if we can find out why i have it -,seen as we haven't looked since initial diagnosis, i have the idiopathic form .
Like you random faitigue and balance etc ,but on the whole i am in a much better place than i was .I work full time ,i have 2 teens and i keep up …just !!!
Things i have found that seem to cause flares is stress and over doing it ( sometimes thats hard to avoid ) I try and have a horizontal attidue to life and do what i can do and not worry about the rest .
I hope you can reduce the mycophenolate- are only discussion has been to increase , i have always been reluctant due to side effects .They are not ideal .Personally though i would rather take them than go back to where i was .
It's good to hear from someone who has the same thing selfishly! It's hard when there is nobody who has any idea what it might be like ..I have to explain to every Doctor , etc what it is and spell it for them .
I hope you get back up to speed , steroids are lifesavers but they are hard on your body .
Good to hear from you .
Hi Meg, thanks for sharing. This is the first place I have found someone like me. Sorry you are having to deal with this mess. My scans sound like yours. Initially I had massive headaches but only once since then. I am working also like you and I’m trying to find the sweet spot of not overdoing or not doing enough. It’s so hard, my fatigue is like I’m melting into the floor when it comes on and when people ask what’s wrong, they don’t get it. My balance issues have increased of late, mostly when I’m super down. They think I might have had some cerebellum issue with the initial inflammation that abscesses thru the dura. I hope and wish you strength going forward in your recovery. Thanks, Craig
Do you get gastro/stomach issues with the mycophenolate? I have periods where my stomach is not good and I don’t want to eat. Also I get like a reflux and a really full feeling. It comes on for several days and then goes away but always comes back.
Have you tried IVIG treatments? Supposedly it works wonders. I’m starting it in November. I have been diagnosed with Sjogren’s Syndrome and Pachymeningitis, fibromyalgia, gastroparesis, lesions on my brain, and so much more. I just had a lumbar puncture, and waiting on the results.
My Rheumatologist recommended the IVIG infusion treatments. It is also a treatment for other autoimmune diseases and cancers.
I wish you well, hang in there.