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.
Patty