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!!!
Interested in more discussions like this? Go to the Brain & Nervous System Support Group.
Yes same issues , stomach and bowels .I take a ppi to help ..if i take them on an empty stomach i feel nauseous, i know you are supposed to take on empty stomach, but it was agreed with my neurologist to take with food to help with gastro effects.
Wish i could say it has got better with time …
Hi! I am new to this site. My husband had vertigo and hearing loss and was sent to the ER where they decided to do and MRI. This happened earlier this year in the summer. The results were pachymenigitis. He has an infection in there but has no headaches, thank goodness. Now he is displaying the following: sleeping a lot, bladder incontinence, trouble lifting his legs, some confusion but does not have a headache. He is scheduled for another MRI in order to compare the two MRI's. He turned 72 in July. It is like he is confused a lot. I am going to get him an an appointment with the neurologist as I am scared why this all happened starting this past week. They think it is an infection from when he had MRSA after foot surgery and the blood clots he developed from his groin to his ankle, which there are 3 of them in his left leg. He does wear his compression hose. I am 5 years younger but have had strokes. We are each other's caregiver. He is just totally wiped out all the time all of a sudden. The bladder incontinence was just now and then but now it is about every day. He cannot help it. I did get him incontinence underwear which he does wear. I am very concerned about why the sudden change in the past week and a half to have such a change. The reason he hasn't gone to the doctor is unfortunately I was in the hospital for a day and a half due to a small stroke and I think it was the stress of worrying about my husband. When they happen which this was the 8th one as I have Lupus and Mitral Valve Prolapse and many other autoimmune diseases as well as Antiphospholipid APS. They happen when I am under extreme stress they happen and I cannot talk or use my right side for a day. I am concerned that my husband not being able to hear well at all, and everything else that he has wrong that it happened so fast. He was put on Meclizine for the Vertigo which he tried to wean off of but found out he will always have to take it. He also has Osteoarthritis. He has high blood pressure and has been on heart medication for years. His appetite is the same which is good. I had never heard of pachymeningitis until he went to the ER with vertigo and the MRI showed this and that is when the neurologist spoke to us. He was glad my husband does not get a headache ever, but said if he got one he needed to get to the hospital right away. My problem is, I cannot find much about pachymeningitis as well as my husband's symptoms and if it is the pachymeningitis or something else. When he tries to walk, he is having trouble lifting his feel. When he does walk all of a sudden he is on his tiptoes, leaning forward and almost is going too fast that he looks like he will fall. He doesn't know why when I ask questions. I tell him I am concerned he will fall. He has a cane but only seems to use it at night to get out of bed to go to the bathroom and back which we do have an attached bathroom to our bedroom. I am scared to death because the vertigo when it started he fell into the shower doors as well as pulled a towel bar out of the drywall. It is I want to know from others if they are dealing with these symptoms with their love ones who have pachymeningitis. I had never heard of this until my husband was diagnosed with this at the ER this summer. I feel like I just cannot look up and getting any more information than a little bit that is what I find on every site but it is very little information. Please help me as I feel I am treading water. Thank you in advance
Hello @dwallech, Welcome to Connect. It must be really difficult when you are both the primary caregiver for each other and your husband has a rare condition like pachymeningitis. @tracyb posted the following link earlier in the discussion:
— Rituximab Treatment for Idiopathic Hypertrophic Pachymeningitis:
@megmor, @77smith77, @lphillips, @jrt26 and others may be able to offer some suggestions and share their experience.
I'm sorry both you and your husband are going through these health issues. It is also good that your husband is not experiencing any headaches. The headaches for me were terrible. There aren't too many doctors that have experience with Pachymeningitis. The only relief I got was rituximab infusions usually given every 6 months which helped reduce the inflammation in the brain mostly around the cranial nerves and dura of the brain as well as other parts of the body. You can send me a private message on where you live and maybe someone can help get you to a specialist that can run more blood test specifically for me it was B cells over producing and attacking healthy organs (autoimmune). The rituximab reduces the 'bad' B cells causing the inflammation. The problem is it also kills the good B cells that help prevent other diseases. So far I've had 4-5 sets of Rituximab infusions since 2017 which the last one being in 2020 and so far my symptoms are controlled with taking gabapentin and tegratol daily for the trigeminal neuralgia.
Hope this information helps.
No matter how bad I feel , I am humbled by what you and your husband are going through. I hope and pray that you both will get better.
Correction. My last rituximab infusion was in July 2021.
Patty, I have had IHCP for over 10 years and seem to be doing well. My Dr. put me on 12.5 mg once a week of methotrexate, and it seems to keep symptoms at bay. If I miss a dose the symptoms will come back. So far, no side effects. It may be worth discussing with your DR.
I was just wondering how you did on that infusion medication…I did an IVIG with the medication Octogam (sp), and the side effects sent me to the ER. I had massive migraines, extreme high blood pressure, chest pains, trouble breathing and vomiting. It was awful. I have Sjogren’s Syndrome and Pachymeningitis.
I hope you’re feeling better,
I hope you’re
Sorry about your reaction. No problems noticed.
I am 66 old male and 2 years ago had a seizure and went blind in my right eye. Have since regained vision. I am diagnosed with hypertrophic pachymenigitis and P Anca vasculitis but this was just the closet thing they could tag it with,and treat me, they really have not seen my issues before. I go to UTSW in Dallas, Tx I was started on 100mg daily doses of prednisone and after 3weeks given a dose of cytokines chemo. And released. Stayed on prednisone for almost a year gradually tapering down. I was to initially start Rituxamib infusions but my insurance would not cover so my team put me on Cellcept 2000mg a day. Have been on that for little over a year now and still in remission but the pachymenigitis is still present in the mri. I deal with bouts of crushing fatigue which have no reason for coming on sometimes..can last 1 day or several..I also deal with imbalance and continually run into really or have little jerks that are totally involuntary. I went thru physical therapy, helped a little. When I get tired in the evening my symptoms are worse but when I wake in the morning they are bad too so go figure. I might get to reduce my Cellcept this February, I hope so as it gives me gastrointestinal problems and I think contributing to my fatigue. I also have stage 2/3 CKD brought on probably by some of the initial meds I was on. Can’t say enough good about UTSOUTHWEST, they saved my life!!!