Hi, I’m brand new here, and very frustrated. I have read some of the information on PrettyIll.com when I am able, and it makes so much sense. I am hoping for some guidance. I am a 57 year old female. I have had interstitial cystitis since 2002, I take Elmiron for it. I have had issues my whole life and I suspect I have Ehler-Danlos hypermobility type………………). I have so many symptoms I can’t list them all. My urologist thinks I have MS. I am scheduled for a “movement study” at Mayo in Sept. with a follow up with an MS specialist neurologist, then another appt. with a rheumatologist who supposedly knows about EDS, but that appt. isn’t until the end of next month. Am I on the right track? What can I say to the doctor at Mayo Clinic tomorrow to get tested for the right things?
The headaches and eye pain alone are kind of scary.
It sounds like you are on the right track. Although you may really have the classical form of EDS. It is also, possible to have MS plus EDS they can run together. Have you seen a Geneticist yet? You should make an appointment with one too. It will take a while to get in. All the symptoms you describe are ones I have too. So I would tell the doctor tomorrow that you suspect that you have EDS, and the way you describe it so do your family members. Good luck tomorrow. I also, had luck with finding a dermatologist to do a skin Bx that showed I have a connective tissue disease. It maybe hard to find a good dermatologist. I lucked out with that because she knew the right pathologist to send my biopsy to. Keep us posted.