I have stretchy skin and I'm hypermobile.

If you haven’t been to an immunologist for a work up I would strongly suggest this . Good luck .

Please contact The Marfan Foundation. marfan.org. They are the people to help you get to the correct doctors in your area. EDS is another syndrome that is included in their foundation.

I'm not a medical person but it certainly sounds like you might have EDS. I have CVID and a lot of my people with primary immunodeficiency do have this. I would try to find a clinical immunologist to check your gammaglobulin levels. Not an allergist-immunologist but a clinical immunologist. See if you can get into a teaching hospital clinic. Usually you have to have a referral.

I I had something called i m m u n o g l o b u l i n panels done. And my first one my A1 was 1:30 and I was on it said it was 72,400 and I was 130 and then my G1 0700 to 1,600 andG I was 921 m 40to23061 in in 2022 that what you are talking about 🧐

I'm also allergic to on my medicine allergy list I have 22 medicines that I'm allergic to. I forgot to mention I have a lot of hernia disc in my neck. I'm going to my primary and I will ask my primary doctor.

It’s possible. Those are symptoms of EDS or HSD, but joint hypermobility is the primary sign.

You can check the EDS Society’s website where they describe the multiple types and you can see if you feel you fit the diagnostic criteria: https://www.ehlers-danlos.com/

All the other types but hypermobile type have a genetic marker. If you feel you fit the criteria, it may make sense to pursue it.

But there are other conditions like unspecified connective tissue disorder (a rheumatologist would usually diagnose this) that might have similar symptoms.

Thank you so much. I’ve been recycling diagnosed with EDS now and now I need to be looking in to probably a possible hip replacement and some other stuff going on. I’ve been recently put into a rare Diagnosis category for not only EDS but a rare diagnose other stuff too. You think I should persist on getting my hip surgery done at my age.

I don't know if this is of any help, but our youngest son has joint hypermobility EDS. I agree with other posts that you should look at the EDS Society website. I believe there is a website out of the UK as well. Our son was diagnosed at a genetics center based on physical criteria when he was checked for Marfans and other connective tissue disorders. However, I don't think the gene has yet been found as one of the subvariants. Their is a research lab at MUSC in Charleston that is trying to locate the gene for the hypermobility subvariant. As far as I know, MUSC was also planning to create an EDS clinic but I don't know the status. In addition, I believe there is a physician in Silver Springs Maryland who specializes in EDS as well as one in the Denver area. Perhaps the EDS Society could point the way. However, these physicians have long waiting lists. I think a rheumatologist who is familiar with EDS would be your best bet for advice on the hip surgery. I also understand that physical therapy could be of some benefit. All the best to you.

So does my daughter . Hence , her EDS diagnosis . Are you on the spectrum ? She is .

Fellow hEDS person here! I was diagnosed in May 2021 with Hypermobile Ehlers Danlos Syndrome by a geneticist. I score a 7/9 on the Beighton scale. 5 months after my diagnosis I suffered a large ischemic cerebellar stroke, this was caused by a large PFO, ASA and ASD. I have a lot of the same symptoms as you. Depending on your area, it can be pretty challenging to get in to receive an actual diagnosis. Good luck to you.