Back From The Dr. - With An Additional Diagnosis

[RobinB]

So I went to see a new doc yesterday after finally being diagnosed at the end of last year. I went to this doc because they were recommended to me as someone who has a lot of knowlege on dysautonomia and can look for a cause for it. The visit was long and a lot of blood work was taken as well as as EKG and rythm strip. Unfortunately none of those results have come back yet.

After spending some time with me and examining me she informed me that I have joint hypermobility. She proceeded to tell me that these two often go hand in hand and it's not clear yet the reason for it.

I have seen several posts from others with EDS and I'm assuming this is what she was implying. When I left she gave me a copy of my chart and it had a diagnosis of joint hypermobility. I'm crushed. My joints don't bother me nor do I have any paid unless I stand for a long time I might have knee and ankle pain.

She said if another cause cannot be found through my lab tests that she is confident that this is why I have POTS and OH. I'm devastated because from what I read it looks like POTS will not go into remission if it's related to EDS. I'm also very worried for my son should he inherit this from me.

I have my doubts that these other tests will reveal anything since many of them have been done before my POTS diagnosis with negative results.

Any advice? Should I pursue an official diagnosis for EDS? Is there any hope of the POTS getting better even with this other disease present? I just feel like I came out it with a life sentence....the only thing giving me hope thus far has been my faith that I would find my cause and my hope that it would be treatable.

Hugs to all

Robin

[MomtoGiuliana]

Robin--in my experience on the forum, EDS is variable in severity and also people w EDS who I know of (from the forum) have greatly improved POTS symptoms over time with treatment or just with time. I wouldn't worry that it is a life sentence but rather helpful to know in developing a treatment plan. Perhaps it would be good to see a specialist in EDS however. I didn't know that anyone other than a geneticist typically diagnoses EDS. I am sure others here know more.

[RobinB]

Thanks for your reply! She had it written as "joint hyper mobility syndrome" but I agree that I don't think she is qualified to give me that diagnosis. Prior to her observation I had ruled it out myself because I can't relate to much that I have read about. Now I will probably look for a Dr with this specialty. And around and around we go....

[Katybug]

Dr Brad Tinkle is familiar with diagnosing EDS and I think is in your area.

http://doctors.advocatehealth.com/a/bradley-tinkle-park-ridge-genetics-2

I have EDS but I also have other complicating illnesses. As MomtoGiuliana said, there is a huge scale of severity among EDS patients. There are many EDS patients that are able to manage their POTS /orthostatic symptoms effectively.

The major theory between POTS and EDS being the cause is that EDS causes your vasculature to be flacid and less able to contract sufficiently when upright. This, in turn, is what causes low BP and blood pooling and tachycardia in a chain reaction. Things like salt and fluid loading, compression and drugs that raise BP like florinef or midodrine (although completely different mechanisms) can all help counter this effect. And, then, other heart meds can still be used to help bring the HR down as well.

I suspect it's not uncommon to not have join pain. My joints that are most affected by my EDS are not painful from it. For example, I can roll my ankles under and walk on the outside side of my feet and not feel a thing because the soft tissue is so lax. Of course my geneticist told me never to demonstrate that again for fear that the joint/s will actually dislocated one day. Now, I do have joint pain from an inflammatory issue we have yet to identify clearly but that is different.

Hope this helps some. I know new diagnoses are often a double edged sword.

[RobinB]

Katy- thank you. I will check out the doctor. What confuses me is that my dysautonomia presented a few months after giving birth. I don't know the cause but I question how I could have eds as a cause and not be sick until that point.

I can also walk on the outsides of my feet! Can't everyone do that?! Jk. I guess it makes sense I was just really hoping my cause would be something treatable and that I could put this nightmare behind me.

Thanks for the info. One more question- is hyper mobility always a form of EDS or is it possible to just have that and it not be? I hope that question makes sense...

[Katybug]

Well...everyone can try that little walking trick....but most would either be in pain doing it or feel like they sprained their ankles after! Lol!

Some people have such mild EDS, they don't experience "illness" from it. Prior to POTS, I think I had some mild symptoms throughout my life but nothing that was serious enough to make me v think something was wrong. Then, I had tick borne illness and everything went to pot. I think having the EDS and some other underlying issues, predisposed me to not bouncing back. The assault on my body from the Lyme/Babesia was like the straw that broke the camel's back.

There are people who have Hypermobile joints that do not have EDS. And, there is some controversy amongst docs about the difference between Hypermobile Joint Syndrome vs EDS and if there is really any difference between the two at all.

[RobinB]

Thanks. I was talking to my friend at work and I had her do some of the things the doctor did and she can do them too. I'm starting to think this doctor was trying to pin a cause to make me feel better. I'll definitely look into more testing though. It seems like the stress from trauma and illness brings POTS out. Also my main symptom is orthostatic hypotention. The fast heart rate comes and goes. Still waiting for my tests results!