New Study Showing Pots+Eds

[sue1234]

http://www.ncbi.nlm.nih.gov/pubmed/22143364

I would love to read this full article. If anyone has access to it, would they mind posting it? The part I'm interested in is at the end they state:

" and outlines possible pathophysiological mechanisms of this syndrome, as well as current and investigational treatments."

I would love to know what "investigational" treatments they have been working on.

[HopeSprings]

Ooh, sounds interesting. I'd love to see it too if anyone has access.

[rubytuesday]

I was a bit confused yesterday when I saw genetecist for EDS III. When I told him a year ago, the heart specialist in dysautonomia said I had POTS but now it is orthostatic hypotension and the ANS is failing, the genetecist mentioned EDS/POTS relationship but not relationship with OH and ANS failing? Whereas cardiac specialist well-versed in EDS said blood/fluid pooling in leg/feet were in part from weaken muscles/veins from EDS, genetecist says it could just be from the ANS failing. (Kidney fx normal and no pheocytomas--sp?, + endocrine fx nl, and dopplers of lower extrems/abd/pelvic US nl). So I have 2 specialists telling me its EDS III and genetecist telling me it most likely is but cannot say definitively without more than jaw/ dislocation, fingers subluxating and one knee subluxating once) b/c of age (mid 50s), body deformed from osteoarthritis (and glutts and tendon torn off hip bone from being hit by car 71/2 years ago). I was shocked when he told me to touch my toes (already knowing the pain in my hip and my orthostatic hypotension/ffainting history and possible more faints with fewer warnings). I did it and as I was rising very slowly, he asked me right away to turn to the side. I got dizzy and had to balance myself holding the cart next to me.

He added he thinks there's autoimmune stuff going on altho repeated intensive testing has shown nothing. He never did full exam, measuring wing span or examining scars or transluscent skin in places or other large areas of skin that are stark white. Never examined the big joints. So I have 2 specialists saying yes, EDS III and a genetecist that says most likely is but can't dx it officially without more dislocations in larger joints. My Delta Granule Storage Pool def. was not of significance w/ EDS either (which was contrary to what his book). I think I had cut into his lunch hour by the time his staff had made all their entries into the computer. We live an hour away. Appt. was for 11:30--his girls started on me early but he didn't get in there til after noon and we were home before 1:30. (EDSers told me he spends couple of hours with you). DSs dilated aorta, GF passing from ruptured abd aortic aneyrysm were insignificant--but he kept urging me to have DS, family and g-kids checked out while they are young b/c I most likely have it. Gee whiz?

I am down to 91 lbs now and gastric mobility issues were attributed to him by dysautonomia. I am so, so confused and discouraged. I'm going to the two hemeoncologist appt. already set up but unless they can find something I'm done. I've just told DH to keep notes, do autopsy and to sue with complaints documented yet unexplored. Genetecist told me even if he gave me the dx ('don't want to add another dx to list of things you already have'), he would instruct his patients to do exactly the things I am already doing. So I feel like I am in limbo with all of this. I told him sometimes when I exercise the BP would go too high and HR too fast. Now moreso, the BP will drop and HR go in 120's -102 range (whereas before it was in 150-170 range, but that I am on Midodrine and just had Mestinon stopped. I wish I could wrap my head around this stuff.

[roxie]

Ooh, I'd like to see this too! I'm just learning about EDS as a possible cause for my POTS

Ruby, it's very confusing, isnt it? The other day I was talking to my dr and he said something about geneticists sometimes have different ideas about what EDS is and whether I were to test positive or not there is no doubt that I have joint hyper mobility and he doesn't plan to treat it any differently than EDS. Could the same be true for you?

It's so hard when all the dr's aren't on the same page

[MightyMouse]

Folks, Until I'm graduated from my university program, I have access to all full text articles you can imagine. PM me with your email address letting me know. I only have access for as long as I'm a student there (the university has a well known medical school and has incredible resources)--I don't have even CLOSE to the access at the university I teach for...

[rubytuesday]

Ooh, I'd like to see this too! I'm just learning about EDS as a possible cause for my POTS

Ruby, it's very confusing, isnt it? The other day I was talking to my dr and he said something about geneticists sometimes have different ideas about what EDS is and whether I were to test positive or not there is no doubt that I have joint hyper mobility and he doesn't plan to treat it any differently than EDS. Could the same be true for you?

It's so hard when all the dr's aren't on the same page

i hate bananas,

The genetecist told me (there is no genetic test for Classic or EDS III) that he would treat me the same as any other EDS III patient and to keep doing what I am doing. He was certain I had it but didn't want to add himself as yet another member of the list of specialist and PCP (IM) who comprise my health care team.

[sugartwin]

This study is interesting because it posits that so many people with POTS have EDS that it wonders if people with POTS shouldn't be separated into people with EDS and people without. I actually think that isn't a bad idea, for research purposes, considering that no one seems to be able to nail down the exact physical cause of autonomic dysfunction in EDS.