The Latest Diagnosis 

Hi! I’ve been following you for several months now. I have 3 rare autoimmune diseases. Very rare. I have Tracheobronchomalacia, Relapsing Polychondritis and Behçet’s disease and MAGIC syndrome. The 3 together are extremely rare. As I’ve been following you, and now with the last few videos of your challenges with a proper diagnosis. My trachea and my whole lungs, all my airways are 85% collapsed. I was diagnosed with that 2 years ago and I’ve been experiencing lots of awful symptoms and I live in a small town in the middle of the Sonoran Desert 🌵 in southwest Arizona. It gets to be 122 in the summer here. No joke. It was 111 today. This heat makes me way worse. I stay inside and I wear a a cpap type air pressure mask 24/7. I can’t walk 25 feet without gasping for air and wheezing so bad. Any type of exertion makes me so oxygen thirst. Like taking a shower. I have to lay down and nap after doing that. Or bringing in my groceries. So I walk very slow and it’s not portable so when I go to town, I can last a few hours before I go home and relax in my recliner with my mask machine on. It’s set to a very high pressure because I can’t exhale all of my c02, and that makes me very exhausted all the time. I can’t take a deep breath because there is no room for more air, because I can’t fully exhale anymore. Ridiculous really. So, after 4 pulmonologists in my town, said there was nothing wrong with me and they started talking to each other and decided I was a complete hypochondriac! Here I am struggling to exhale and they said I was faking for attention! Yea! Medical attention! How can I fake my short, noisy exhale that feels like it’s 20% of normal people?! So, I drove 3 hours one way to Phoenix, to see an interventional pulmonologist that deals with unusual problems with breathing. He was super mad that how I was treated by my lame towns Drs! I got an endoscopy scope wile under anesthesia and he saw alll the collapses and I got a CT scan of my airways. I’ve been suffering for 4 years and this Dr diagnosed me right away with Tracheobronchomalacia! However, I told him about alll my other awful scary symptoms and he got me an appointment to see a Rheumatologist that specializes in rare autoimmune diseases. Back in my lame town, I was sent for bloodwork and the dr said I was fine, nothing came back unusual. Pfft. The Rhumatoidologist , also in Phoenix, sent me for a huge blood work tests. Like 15 vials of blood were extracted from me. Some were special send out tests, and apparently very expensive too. I’ve got good insurance right now, so there were like 45 tests done for me to figure out what is happening to me. I was immediately diagnosed with Relapsing Polychondritis. It explains all of my odd symptoms and, last year , all of these strange symptoms appeared all of a sudden! I was also diagnosed with type 2 diabetes as well. My whole body had so much inflammation that my Dr was mad that none of my lame local drs did not even look for things like MS, Lupus, arthritis type diseases. I was also diagnosed with Psoriatic arthritis. I have tiny spots of crusty sores on my scalp only. And my finger nails have all kinds of deep ridges too. I’m a medical dumpster fire! Please look into Relapsing Polychondritis. There is heart issues that go along with this disease. My eyes are red and losing my vision pretty fast. Eye, heart, cartilage, connective tissue problems, joint problems and ears, nose and lung problems. Basically, RP, is an autoimmune disease that my body is attacking every bit of my cartilage, connective tissues and have vascular problems. There is a group of people that have hyper mobility and have RP too. With or without the gene. It’s so rare that even regular Rheumatoid drs have zero clue about it. And, pulmonologists too. It’s very rare, they probably heard of this in med school but only spent 3 minutes on the subject of rare diseases that can occur. Not only have they not even heard about it, they have zero clue on how to test for it. There is a hospital in Philadelphia that deals with RP, and are the best! My dr calls the drs there to discuss my case. So, I might go to see what new thing to try. So, unfortunately, RP, and TBM are progressive, no cure and rare. Especially together. Or in my case very rare. Lucky unlucky me. However, steroids seem to make sense to take to bring down inflammation. But, makes TBM get worse faster! So, I’m off them. My pulmonologist says it’s a catch 22 for me, because steroids can work for my airway collapses, but, by having RP, speeds up the progression of my symptoms and malfunction of certain organs. So, 6 months ago, my Rheumatologist prescribed Methotrexate, a form of chemotherapy that possibly can slow down the progression of my body eating up all my cartilage and joints, etc. I self inject once a week. I’m pretty sick for a few days after. I relapse usually for 10 ish days, then in remission for 4,5 days. It’s exhausting. I’m on Ssdi as I am no longer able to work in any capacity. I’m 55, and with all my diagnoses, I qualify easily. I’m in a support group on FB. What a blessing they are! I felt so so alone. Only a few have all 3 like me. I recently found another woman in Italy that has exactly what I have. Everyone is different, certain parts of the body are worse than others with comparison. I’m so glad I found you, I hope that you can finally get diagnosed with something, so you can learn more, on how to not get worse! And acceptance! I’m just getting into eating the anti inflammation diet. And the Mediterranean diet as well. Since I’m half Italian and half Russian/Polish Jew, it makes sense that I am predisposed to these diagnoses. I got genetic testing and it proved that my genes and DNA are involved in my health problems. So, I just wanted to reach out to you, to hopefully help you on your path to correct diagnosis. I hope we can talk more about what we deal with. You can message me anytime!