pachymeningitis

Posted by cgrammie2 @cgrammie2, Aug 11, 2012

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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@amandajro

Hello @lphillips and welcome to Mayo Clinic Connect, a community of members who give and get support from one another. I am sorry to hear about your husband's diagnosis and yet I am happy to hear that he is not in any pain. @jrt26 has shared some information with you that may be helpful already.

What, if anything, can other members offer to support you?

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Thankful that I found this Connect site to hear from others!

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@lphillips

Thankful that I found this Connect site to hear from others!

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Welcome I have found this forum to be very helpful.

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@lphillips

My hubby was diagnosed with pachy meningitis finally in Oct 2020. Back in July 2020 he began having terrible trouble with his balance when standing and walking. Since he had some ringing in his ears we started with an ENT. The ENT then referred us to a neurologist who prescribed the MRI that showed pachy meningitis. My hubby has had a lumbar puncture, CT scan, and numerous blood work done. We have ruled out so far bacteria, virus, fungus, autoimmune causes, plus tumors / cancer, etc. We are now seeing an infectious disease doc. My hubby feels like his double vision is getting worse so now we are waiting to see a neural ophthalmologist (there are only 2 in our area of San Antonio). He tried prednisone for a few weeks and it made him feel dizzier than he already is plus the weight gain. No more of that. Thankfully he is not in any pain but he can only walk with a hiking stick, and tires easily. It is good to hear that we’re not the only ones who seem to be “alone” with this diagnoses. Talk about the year 2020- this plus CoVid and everything else! Praying for treatment and complete healing for everyone!

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It is so hard to watch our loved ones go through this. I'm glad that others are on here that can share their symptoms, diagnosis, treatments and stories.

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@scaredmomma

Thank you so much. I did complete the online application today so hopefully we will hear back soon. Thank you so much for the resources and replys. It gives me some hope.

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We have heard back from the Mayo Clinic and we are in the process of completing the forms. Fingers crossed for an appointment.

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@lphillips

Thank you for your information! I am glad to hear that the Rituximab infusions have helped you. The inflammation in my husband's dura seems to affect his left side the most. He feels as if he will fall to the left or backwards when standing. He also has had some numbness in the left side of his face. Waiting patiently for our appt in March.

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@Iphillips. I also had numbness on my face that started on the right side above my cheeks then slowly travelled towards my forehead and then to the left side of my face. It went away gradually as well after the 4th and final rituximab once a week infusion. I started to feel ‘normal’ again probably two weeks after the last infusion back in July 2020. There is hope. I understand how he feels since we look okay from looking at us but we don’t feel well at all. The balance issue especially when walking or standing up is scary too. I tripped and fell a few times. Be careful and listen to your body when tired get as much rest as possible. I kept busy doing some brain games on line. I downloaded a free version of Lumosity and also like crossword puzzles and sudoku. Take care. Contact me anytime. Keep us posted on your husband’s March appointment.

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@jrt26

@Iphillips. I also had numbness on my face that started on the right side above my cheeks then slowly travelled towards my forehead and then to the left side of my face. It went away gradually as well after the 4th and final rituximab once a week infusion. I started to feel ‘normal’ again probably two weeks after the last infusion back in July 2020. There is hope. I understand how he feels since we look okay from looking at us but we don’t feel well at all. The balance issue especially when walking or standing up is scary too. I tripped and fell a few times. Be careful and listen to your body when tired get as much rest as possible. I kept busy doing some brain games on line. I downloaded a free version of Lumosity and also like crossword puzzles and sudoku. Take care. Contact me anytime. Keep us posted on your husband’s March appointment.

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Will keep you posted! Thank you for your words – things I need to hear. Thankfully he has a job where he can work at home if he needs to and still keep up with all that he's responsible for.

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@scaredmomma

We have heard back from the Mayo Clinic and we are in the process of completing the forms. Fingers crossed for an appointment.

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I'm so upset looks like the Specialist who have been saying for the last 10 years that nothing has changed. But she would plead to me mom I know my body by now and I know I'm still not feeling right.
Come to learn yesterday after a recent MRI that the dura in her brain has hugely increased in thinking and the thinking in her spine is back but is now on scar tissue and resembles the same as her initial symptoms in 2010.
Please make sure your doctors are reading your full reports. She has scheduled MRIs every 6 months but recently of her complaining about her symptoms it has been every 3 months.
The report in the first lines said no changes from the last but when your read the full reports it has been increasing for quite some time but they failed to compare earlier results.
I'm so scared. She is so stong and so amazing. So optimistic and I have to be too but as a grandma and a mom I'm very scared she is only 25 now.
They are completing more tests and making changes to her medications.
I'm so thankful for the drs that took the time to sit with her and show her this yesterday. And for them now wanting to help her in her fight. They are now willing to do a referral to the Mayo Clinic for her as well.
You are all amazing people ❤

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I was diagnosed w/ Pachymeningitis several months ago. It was diagnosed thru several MRI's. It did not show up on CT scans. I also have another rare autoimmune disease called Behcet's disease. Some people w/Behcet's have very mild disease w/eye inflammation and mucous membrane ulcers.But in my case it has affected every organ system in my body including my brain. So my docs think the cause of my Pachymeningitis is most likely the Behcet's. But there is another complicating factor. In 2007 I had to have a Ventricular-Peritoneal shunt put in my brain to remove excess fluid that had been building up. Some doctors say that the Pachymeningitis could be caused by the shunt which remains in my brain currently. However the neurosurgeons say the shunt is NOT the cause. Has anyone else had any experience w/ VP shunts causing or affecting Pachymeningitis? Last yr I was hospitalized.11 times and I've already had 6 admissions so far this year. The admissions are for Behcet's flares but I usually have severe headaches and other neurological problems at the same time that mimic strokes.This is all so overwhelming! Can anyone relate?

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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?

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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.

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