I've recently joined this board as I'm waiting to see Prof D'Cruz at London Bridge. I've seen 4 specialists already this year and now him. I have Ehlers Danlos Hypermobility Type, along with POTS and various other things.
In the past 18 months I've had 3 bouts of ischaemic colitis, hence the doctor-crawl. I have no obvious risk factors and the gastro prof I saw most recently (Prof Silk) thinks it may be vasculitis. (I had Pseudomembraneous colitis with negative bacterial cultures, diagnosed as ischaemia instead by biopsy)
Therefore he's sending me to see if it's an autoimmune connective tissue disorder. I'm sure I have had all the tests many times before and a lot of the symptoms seem to be the same or similar to those of ehlers danlos (pain, fatigue, funny skin, gastro problems etc) I fit all Prof Hughes's "alternative criteria" except asthma and the lab ones which I don't know about but must have been looked at over the years...
The cardiologist tests were all fine (I have POTS, a minor mitral valve prolapse and a dilated but stable aortic root)
I'm scared because if the blood supply to my guts can be temporarily cut off (angiogram normal so know there's no specific blockage or narrowing) does that mean the same could happen elsewhere, with far worse consequences...?
Any ideas anyone? So far, the only thing the Drs have come up with is a Medic Alert bracelet
Thanks very much