a very rare inflammatory disease called Multicentric Reticulohistiocyt

@midniteangelcloudjum I start with AI to give me information that is somewhat neutral. Google is a pay to play search engine, so if you pay Google more than someone else you go to the top of the answer stack. Most all search engines are the same. AI is not pay to play today, maybe tomorrow, just not today.

I do rely on my doctors a lot since they know my medical journey better than I do. They have the education, the training and the experience. I just like to understand what they are telling me so I do AI research. I was an analyst for my 50+ year career.

BTW, the AI tools make it very clear that they are not telling you what you should do, they will possibly provide options if you ask. Mostly I try to just asking factual questions, not their opinion.

I have found AI to be as reliable as any human, i.e. very capable of mistakes.

@midniteangelcloudjum
Another AI ans -
"There are no active, disease‑specific chat rooms for multicentric reticulohistiocytosis (MRH) based on current search results, but there are a few legitimate places where MRH patients gather, ask questions, and find others with the disease.

Because MRH is extremely rare (fewer than a few hundred documented cases worldwide), communities tend to exist inside broader rare‑disease or histiocytosis groups, not as standalone chat rooms.
Where MRH patients actually connect today
1. Histiocytosis Association
Listed by GARD as a patient organization for MRH. Offers patient‑to‑patient connections, virtual meetups, and private groups for histiocytic disorders. While not MRH‑specific, they are the closest organized community.

2. Global Genes Rare Disease Community
Large rare‑disease platform with discussion boards and peer‑matching. MRH patients sometimes join here because it supports ultra‑rare conditions. Listed by GARD as a resource.

3. NORD Rare Disease Community
NORD hosts forums and patient stories for rare diseases.
MRH doesn’t have its own subforum, but patients with ultra‑rare inflammatory diseases do post there. Also listed by GARD.

4. Arthritis Foundation
Has online support groups for inflammatory arthritis. MRH patients sometimes join because the arthritis component can be severe. Also listed by GARD as a relevant organization.

5. Facebook Groups (the only place with actual MRH patients talking)
Search terms that reliably surface active groups: "Multicentric Reticulohistiocytosis”
“Reticulohistiocytosis”
“Histiocytosis support”

These are usually small (10–200 members) but tend to be the only places where MRH patients talk day‑to‑day.

What doesn’t exist
Based on the search results:
No MRH‑specific Reddit community
No MRH‑specific Discord server
No MRH‑specific real‑time chat room
No active standalone MRH forum

This aligns with GARD’s note that MRH is so rare that patients rely on broader histiocytosis or rare‑disease organizations. "

Hope this helps. I actually have a couple of very rare conditions myself, like 1 in 5 million people, the other is like 3 per million in population. So, I do get it that it feels very lonely out there.

I am so glad your appointment went well for you. I work every day to find joy in living. None of us know how many more days we have and thankfully we don't. I would not want to know.

My autoimmune problems started 7+ years ago. Before then I saw my PCP twice a year had an Endo for my thyroid problem and a dermatologist for my annual Mole Patrol. Now I have a cardiologist, a aorta specialist (11 years of Fellowships prior to hanging his shingle out), an arrhythmic physiologist, a hematologist, an oncologist, an infectious disease doctor, a rheumatologist, a neurologist, a nephrologist, a kidney surgeon, a pulmonologist, an otolaryngologist, an ENT, a sports medicine doctor, a spine pain medicine doctor, a joint pain management doctor, a GI doctor, a dietitian and the best physical therapist I have ever had. They are my teammates. I wish I didn't know them, but I do and I'm glad they are there for me.

I first learned to find joy in the things I took for granted, the feelings of shower water, clean sheets, the smell of fresh cut grass, my favorite dinner, the birth of my first great, great niece. She is precious. She will be 3 in a couple of months. No, I may never walk three miles around the neighborhood again. I can still enjoy a sunrise and a sunset and a glass of wine. I can still help my neighbor with her special needs sister. I can shop and prepare my meals. I even clean up afterwards - not as joyful as eating for sure. I have not lost any of my senses. I can smell coffee and chocolate. I can go on cruises. I do believe Life is Good in spite of my new limits. Fear and anger got me nowhere I wanted to go. I hope you find peace and joy as you navigate your challenges.

@kayept Methotrexate is considered a cancer drug; it is a type of chemotherapy used to treat various cancers, including leukemia, breast cancer, and lymphoma. It works by slowing the growth of cancer cells. It is not recommended for a 79 yr old with an ICD.

@midniteangelcloudjum The dose of methotrexate given for autoimmne illnesses is much lower than the dose used in cancer treatment. It has limited success in treating PMR and did nothing for me, and it does need to be monitored carefully for potentially bad side effects. I understand though that it works better for rheumatoid arthritis and you may need consider its success in that area.

I would certainly be concerned about the cardio issues you have raised and any potential side effects in that area. Have you been able to get any advice from the doctors you see in relation to the ICD?