Rheumatologist Thinks Eds Is A Possibility But...

[Kris4444]

Hi,

I saw my doctor and we went over all the Mayo stuff. He doesn't know much about hyper pots. I told him that many people with hypet pots have EDS. I showed him my double jointed elbows, pulled my thumbs down to my forearms told him I can stand on my ankles, touch the floor with my palms without bending my knees....he was intrigued.

I was diagnosed with fibromyalgia at 19 after a car accident wouldn't it be something if it's been EDS all along?

I also told him about MCAS. He is going to look into that as well. Now the down side...he doesn't seem to know much about either EDS or MCAS.Is that normal? He said that he doesn't even know if their lab is set up to test for them. I find that hard to believe because he is located at Northwestern in Chicago and they have a state of the art facility. I guess he doesn't see this too often.

I want to thank everyone for all the info I was able to talk to my doctor about today. I still have hope that there is an answer for me thanks to all of you.

Kris

[ukwildcat]

Funny I just posted about my RA visit(frustrated). Frustrated is how I am after almost every doctors visit. She did not know anything about pots either but she said she didn't know any way EDS or RA would be related to pots at all. She knew nothing about Mast cell. She did hypermobility test on me too and said I was definitely hypermobile. I am always thankful to hear that doctor was willing to look into your symptoms,conditions, and treatment. I am glad you have a doctor that is interested. mine wasn't. My family doctor recommended this RA doctor and I am so upset now that I didn't check into her (like I usually do). It was a horrible visit and I learned to always do my research ( or horrible visits are my own fault). Good luck to you. I hope you get a diagnosis and find a treatment or cure that works for you.

[ukwildcat]

Does your rheumatologist treat your fibromyalgia. She said I had hypermobility and possible EDS(even though she didn't know what EDS stood for a beginning of appointment) and some signs of fibromyalgia too, but didn't act like she treated either one of those. My first positive RA test was in 2005(low positive). I was fainting so often then that I was more concerned with heart than joints. Joint pain has gotten worse and I was tested again recently as a high positive. Why is nothing ever an easy diagnosis. She is sending me for my third RA test. She said she cant diagnosis with their standards and is sending me to the same lab I went to a month ago. Don't know if I go to lab or go to new doctor or just try to live with the pain even though it is affected even my limited already pots life.

[Katybug]

Most rheumy's don't know about either one or they don't know much. And, both of these are "specialties within specialties "because they are relatively rare. You need to seek out an immunologist or hematologist that is familiar with/specializes in mcas. For EDS, you might find a rheumy that has specific knowledge but you more than likely will need to find a geneticist that is familiar with EDS and mixed connective tissue disorders. Asking for leads on this website for docs in your area is helpful. For EDS, I belong to a forum called Inspire at ednf.org. I asked for referrals to PTs in my area that are familiar with eds and had a list in hours. So if you suspect eds you may want to go there to get a list of docs for that.

[Kris4444]

Wildcat he does treat my fibromyalgia as well as my spondyloarthritis, DDD, Raynaud's and UCTD.

Katy I became a member of that group on Inspire the other day. If you look me up under the same name you will see a pic of me and Soulie. I am on inspire a lot for my GI issues.

[Kris4444]

Katybug I sent you a PM

[Chaos]

I'm impressed that at least your doctor was "impressed" and is willing to check into the info you brought him. That's a good start! Better than most docs. And, as Katybug said, most docs, even specialists like rheumatologists don't know much about EDS and I have yet to find an allergist (even at the big name places) that knew about MCAS before I brought it up to them. So, seems like a good sign that's he's willing to look at it and doesn't just dismiss it right away.

But, as noted above, you may very well have to go out hunting to find the specialists and the labs to get to the right docs/tests etc to get the answers you need.

I actually had the experience yesterday of seeing a new doc and having him tell me "you are a fairly typical case......" I nearly fell off my chair because I am fairly certain those words have NEVER been said to me during any doctor's visit in my lifetime. So it's really nice when you get to the right place and see someone who actually knows something about your condition.

[Kris4444]

I guess I just figured Mayo would have figured this all out. It's disappointing that I have to continue hunting. You are right though about my doctor. Im lucky to have him.

[Katybug]

My PCP (who has been a real trooper and stuck this out with me for 6 years now) said he was thinking about referring me to one of the research centers like Mayo, NIH,CDC but when he did some research trying to find the best place to send me, he found research that shows that only 10% of the people referred to that type of facility get either a more definitive dx or a better tx plan than what they had at home...so we ditched that idea and decided we would keep at it til we found docs in our area that could help me. I was floored by that statistic (and frankly, so was he.)