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We have two different causes of bladder dysfunction so unfortunately what worked for you will not work for me, but I do really appreciate you taking the time to answer my question!
Don’t see where I was looking for a diagnosis…I believe I was trying to “do my homework by talking to other patients”. Nevermind.
I would honestly see a gastroenterologist if you are able, and see if you can rule out h. pylori bacteria as a cause of your ulcerations. It is responsible for most ulcers. That is why antibiotics are the treatment of choice for ulcers. When I had an ulcer, it was the first thing they checked for. I had been taking NSAIDs for a couple of years due to an automobile accident, and when I turned up negative for the bacteria, only then did they deem the medication as the cause, combined with low stomach motility.
In any case, you will see that a lot of symptoms are common to quite a few different disorders–the key is in how they present. Knowledge is power, but try not to worry too much until you’ve seen the geneticist. A good one will check you for all connective tissue disorders :).
I’m not a geneticist and won’t play one on Pretty Ill, but I have visible veins all over–due to my pale skin, not VEDS. I have Hypermobility type. The geneticist will know the difference when they see you and will let you know. Regarding your ulcers, do you have h. pylori or no?
I lost my moons (except for my thumbs), and my nails are stark white except for the reddish streak across the tip. In fact, my nails are what helped with my EDS diagnosis. After 18 months and almost as many doctors, no one had a clue and then I subluxed my T6 facet joints. I remembered reading something about reddened cuticles being tied to connective tissue disorders, so I went back to that research and went down the list of CTDs–when I read about EDS it finally explained everything and voila! here I am :).
