Should I Ask My Dr To Investigate Eds?

[Mytwogirlsrox]

Hello all EDS-ers!

I'm contemplating asking my Dr of I might have EDS. But I would like to hear what you all think, and your experience with diagnosis, what are your symptoms?

I have POTS and NCS. If I self do the Brighton scale, it's a 2. I can touch the floor, I can bend one thumb to my forearm.

However, Im double jointed in my thumbs. I can dislocate my shoulder on purpose, and my hips. None with any pain etc I also have a beautiful varicose vein in my leg, and gnarly stretch marks after having two 10+ lbs babies. My skin is kinda stretchy and my veins are very visible in my arms and legs.

I have never have a broken bone, torn ligaments or any problems with bruising or healing after surgery. No premature rupture of membranes with pregnancy and

C-sections healed perfectly. I've had an echo and I don't have MVP. Nor do I have blue sclera.

My doctor kinda thinks I'm a whack job, so I don't really want to bring up something that isn't warranted. I kind of feel like there are a lot of people with EDS who have POTS so could that mean I could have it too? I've never had a doctor even say EDS to me... So maybe i don't fit the bill...

What do you guys think?

[roxie]

With POTS I think it's worth investigating & not letting any stone left unturned.

However, i see your questioning it if your dr already thinks you're quak. What kind of referral do you think he'd be willing to give you?

EDS isn't the simplest diagnosis & is best diagnostic by a geneticist. Sometimes a rhumetologust or orthopedic is also familiar.

A few years ago my POTS dr acknowledged my flexibility but it didn't go further than that.

My new POTS dr picked up on it in my first visit going through my history & sent me to a geneticist who did the diagnosis.

There are a lot if things that go into EDS so it's hard to say just bc you can do one "trick" that to have it or you don't. Example my brothers thumb & shoulder are double jointed. He doesn't have any other signs of EDS.

I have no double joints but am extrememly flexible & meet many criteria for EDS.

If your uncomfortable bringing it up to your dr maybe you could spend more time investigating EDS on the national foundation's site & forum EDNF.org

Or get Dr Brad Tinkle's book "Joint hypermobility handbook"

Lastly, my hips really pop a lot like you described & ssometimes my shoulder too. My hips make an awful noise & then burn. I talked to my exercise physio about this & he said it's extremely rare to dislocate you hip. It is likely you ilabitol lobe- then tendons running through your hip, pelvis, & femur moving. Dr Tinkle's book also says that as well. Maybe that's whas happening to you too.

Hope this helps

[MightyMouse]

My Beighton score is 5, but I do not have EDS. Rather than ask you're pcp, have you considered getting a rheumatologist consult? They are more likely to be able to make a good differential diagnosis (that is, be able to tell one hypermobility disorder from another--for me, mine is related to short stature/mild form of dwarfism, although it looks very much like EDS).

Nina

[Mytwogirlsrox]

@ I hate bananas -- Thanks for the info. I agree that POTS should be investigated, I just wish my primary care doctor would agree. He seems to think that its all anxiety and that Im a bit crazy. I had a HUGE bout of craziness after being diagnosed. So I dont exactly blame him lol. Its interesting what you said about the tendons rather than the hips. I just always heard my Grandma saying that her hips dislocate, and mine definitely do something wonky.. so I figured that was the case. I read up on it, and it does sound like its super hard to actually dislocate them. So when you talked about your brother, does he have EDS? So you have a family history? I dont have a family history. I have nothing lol.. I barely have any symptoms of anything so Im really trying to figure this all out.

@ Mightymouse-- my Dr is kinda a jerk and I have to get a referral through him to see anyone, and he would barely give my a referral to see a vascular surgeon for this huge varicose vein I have. He thought it wasnt a problem, and there was nothing that could be done about it anyway. I laughed since in another state I have a vascular surgeon who was all ready to laser it since its in such a bad spot ( its on my shin) and it could rupture easy and I would bleed alot (infortunately, I moved before I could get it done) I wonder what Rock he lives under sometimes.. people get their varicose veins removed all the time, and there are numerous ways to do it. Im starting to think that maybe I should find a new doc. lol Thanks for sharingyour experience though, I really appreciate it

[roxie]

I had some nice typos last nice, I was tired, lol! It's the ilIobatol band!

No, my brother does not have EDS but I DO. No one else in my family has EDS either. This is the way it was explained to me. Some families have a gene for EDS that lays dormant. At times the gene mutates and the baby born with the mutated gene will have EDS, I.e. ME. EDS can lead to POTS as well as other things.

Now that we know about EDS we see some family member with a few traits so we think we know where the gene came from. But as the geneticist told me one trait in and of itself (like one double joint) isn't enough for EDS. Actually, almost every person has at least one loose joint.

Does that make sense?

[roxie]

Mighty mouse- you are considered hypermobile but you don't have EDS?