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.
I am being worked up for pachymeningitis. It was diagnosed by MRI while looking for the cause of hearing loss. It is complicated by also having Rheumtoid arthritis. I have constant pressure and headache. My neurologist is aggressively looking for the cause. He has had one other patient who unlike me was asymptomatic. I am awaiting results of CTs and MRIs. My next step is to consult a rheumatologist at a major university teaching/research hospital. I have no recommendations at yet. I would like to stay in contact with you. This is a lonely journey
It is a lonely journey. I too have come under suspicion after 3 MRI’s for Pachymeningitis. I was diagnosed two years ago by a rheumatologist with IGG4 autoimmune disease (very rare) which attacks organs. It caused pancreatitis, scleritis, diverticulitis, bladder interstitial cystitis, bowel obstruction (two surgeries) gastroparesis, and just seems to attack whatever organ it feels like attacking. A common cold turns into pneumonia with pluresy. It’s so frustrating. Fibromyalgia and Chronic Fatigue Syndrome set in also. I’m always tired, but try to remain as hopeful as possible and research, research, and more research. I have a laundry list of diagnosis in my 4 year medical journey and have been called a medical anomaly by all of my doctors. It is very difficult to be diagnosed with such rare diseases and also finding specialist that truly understand the diagnosis and treatment options. Unfortunately, what I’ve learned so far is even the treatment is in its clinical phases, not a cure, it’s just a an option. It is very scary not knowing whether to do the treatment (with its known side effects) or to wait until the disease is better understood. Everything points to steroids and Rutiximab (has serious side effects). I’ve kept a medical journal and pain diary to see if certain foods trigger a difficult day. I’ve cut almost all meat out of my diet, juice organic spinach, kale, carrots, beets and apples. I use organic vegan powder with powdered greens and fruit for smoothies. I only graze on food, push lots of fluids. No gluten, no gmo foods, very little dairy (switched to almond milk or coconut milk), and try to push through the pain everyday. My circle of friends has diminished to only a few who understand to a certain degree. It is lonely and at times I become fearful. Trying so hard to fight this battle holistically, although I do use medication for the pain. Essential oils have been a life saver as well. I keep thinking if I make my body a healthy vessel that it will slow the disease process. I pray it does, I’ve been tried on so many medications and experienced so many side effects. It’s so frustrating. The next step, my neurologist wants to do nerve testing, lumbar puncture, and a spinal and brain biopsy. I am being referred to Boston, just waiting for an opening in this specialist’s schedule. It’s scary waiting and the not knowing.
I’m researching Pachymeningitis and how they treat it. I keep seeing steroids. I can’t tolerate steroids. It’s really frustrating. I completely understand your concerns. If I learn more, I’m happy to share what the doctors tell me.
Hugs to you, I pray we all find the solutions we need.
Thank you for the information
We are here to talk and hopefully get some ideas about treatments.If you would like we can exchange phone numbers and talk via phone! Private message me. we are on central time… call and we can chat about our journeys!
Yes it is a lonely place but we are here and would love to share our story one of the most important things I learned watch for things that are not normal get it checked out asap
Please private message me for my contact information likeI said we live in Tennessee and would love to talk with others and share our story and treatments some good others not so good….what works for one might not for the other! Seems it is trial and error!
Hello @cgrammie2. Good to see you back on Connect. You’ll notice a few changes on the site since you last visited.
Please note that I removed your personal phone number from your messages. Connect is a public site and we don’t want you to get unwanted phone calls. For your privacy and security, it is better to send a member a private message to exchange contact information.
Here’s how to send private message.
1. Click the member’s @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.
Having said that, by sharing on Connect, you not only help the members with whom you exchange information but also those who read the forums but may not have the courage to post.
CGrammie2, How is your husband managing these days with his diagnosis of pachymeningitis? How are you?
my husband has been in remission for 300+ days headache free, not much going on at the moment he did have aortic valve replaced in 2014. so light is at the end of the tunnel! as for me my health is not what it has been all the stress is playing on my illness RA, H.B., now stage 4 kidney disease? I see a specialist in Jan for the latter. It is going to be either the diabetes or my RA causing the kidney problem. But we will see what can be done with my illnesses. Prayers for all with these rare diseases, praying they find what is causing and how to treat them! Thanks for asking, Debbie and Ray
@shosey you are very welcome my phone number got blocked, I wanted to share with everyone what he has been through and get your journeys as well. I am trying to find how to send in a private message my phone number and to share all the test, trial and errors we have gone through.
Thanks and prayers to you and yours,
Ray and Debbie
Stress certainly does play havoc on our health and caregiving is a taxing job. You may be interested in exploring other groups on Connect in relation to the conditions that you are managing, for example see discussions about
– RA in Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/
– Stage 4 kidney disease in the Kidney & Bladder group https://connect.mayoclinic.org/group/kidney-conditions/
– Caregiver in the Caregivers group https://connect.mayoclinic.org/group/caregivers/
– Aortic valve replacement in the Heart & Blood Health group https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/
Let me know if you’re looking for anything in particular.