Hi! I’m 27 years old and have been struggling medically from the time I was 5. At 7 I was diagnosed with Crohn’s, but since have been told “you don’t have any active colitis” or “we can see something wrong in your bloodwork but can’t identify it”. I have been to GI, hematology, ENT, derm (horrible skin rashes and HS diagnosis), asthma and allergy, nephrology, and nowwwww rheumatology. My rheumatologist has done work ups and landed on “fibromyalgia” and chronic systemic chrons disease. I have symptoms such as intense stomach pain from time to time, Reynolds, anemia, chronic inflammation, constant nausea, intense fatigue and in the past few years Ive developed severe joint pain at my shoulders neck and hips. I’ve started humira but I feel like it makes me worse and sick for 2-3 days, I feel great for 3-4 days, then have to do another injection. It sucks.
So….. I’m here to ask you, what else can I do? I’m looking into getting a genomic sequencing study done and traveling to the Mayo Clinic or John Hopkins for another opinion. Does anyone have any suggestions for genetic doctors (I live in the Boston area but willing to travel anywhere at this point)? And does anyone have any recommendations for who to go to first, immunology at a large institution like Mayo Clinic or genetics clinic? I’m overwhelmed. Any advice would help!!!!
#Undiagnosed #AutoimmuneDisease #Fibromyalgia #CrohnsDisease #RheumatoidArthritis #InflammatoryBowelDiseaseIBD