marfans

Hey everyone! I’m new here and I stumbled upon this app and group while researching (as I have been doing a lot of recently!) I have been to doctor after doctor throughout my life only for them to tell me everything is normal and nothing is wrong, or I just have anxiety or simply that they don’t know and give me some kind of off the cuff advise. From skin problems and back pain when I was 16 to chest pain and serious bowel/stomach cramps in my 20s and most recently I’ve had my hormones checked twice the last year and find myself at a rheumatologist only to be somewhat dismissed and I think as I go back today I am going to hear the same thing. Everything is normal. This last year or 2 I have been really having some what I would describe as flares or episodes. I feel fine for a while and then I’m just feeling crappy for days or weeks on end. A friend of mine mentioned I might have EDS and MCAS. Through further investigation i feel I may have POTS as well. And even more research brought up the possibility of Marfan syndrome. I have a ton of markers for these as far as symptoms go and physically as well as looking back on past experiences and even at my children(they have some features that caused me to look into marfans) anyhow I’ve been discouraged lately and often downplay to others how bad I’m feeling and how often I feel that way. I start to wonder if it is in my head but know deep down it’s not. I’m going to a new doctor in October who my friend suggested and says is knowledgeable in these areas so I really hope to find some things out. Just looking for support and advice in the meantime. Thanks for taking the time I know this is a long post! #Undiagnosed
#EhlersDanlosSyndrome
#MastCellActivationDisorder
#PosturalOrthostaticTachycardiaSyndrome
#marfans Syndrome

Where to begin...I got out of the Army Airborne bc of Marfans. The Army said I could stay in and never JUMP AGAIN or get out; what's the point of being Airborne if you can't jump, so I got out. (94)
I couldnt mentally handle my disabilities, so I drank and became an outstanding bartender til I got in trouble with the law
(3 dwis in MD). I quit that field in 2004.
My next battle was depression, anxiety, self harm for many yrs, I bounced in and out of the mental hospitals (23 inpatient stays) til I was finally diagnosed BP1, BPD, ANXIETY, PTSD.
2011, I FINALLY GOT SOBER (7yrs+ today)
I decided to go back to college a d study law, so I can help other Veterans. 2016, I graduated and was working on taking my LSAT for law school. 2017, began my health year from hell with Marfans Syndrome and Anxieties. I had 3 heart attacks and emergency gallbladder surgery in July 18.
Today, I'm still helping Veterans with. Cases on a pt basis, but I feel lost. Disability is kicking my ass. #marfans