EDS diagnosis

[JennKay]

Hi all - question to those that have been formally diagnosed with EDS. How were you officially diagnosed and which doctor made the diagnosis? Am asking b/c my OBGYN has suspected I have EDS based on my symptoms and her previous experience identifying patients with EDS. But, I asked my EP about getting a genetic test, since he is the one managing my most prominent symptoms (the ectopics and adrenaline surges), and he didn't think it was relevant. I've never sprained anything in the past and am not hypermobile - I'm not double jointed and can't hyperextend anything. My general orthostatic intolerance and cardiac symptoms fit some sort of dysautonomia, but not POTS. Am still working to get my female hormones sorted out as well b/c lately I've been dealing with what feel like hot flashes... Secretly hoping I'm in early menopause and hormones will make me feel better!

Thanks ahead of time for your responses 🙂

[MomtoGiuliana]

I believe a formal diagnosis must be made by a geneticist who is a specialist in this area.

Here is one past discussion

https://www.dinet.org/forums/topic/14472-eds-experts-want-to-make-an-appointment

 

[Sushi]

I was diagnosed by an autonomic specialist using the Beighton scale for hyper mobility. As far as I know, they don’t yet have a genetic test for hypermobile EDS. 

[MikeO]

I know nothing about EDS or girl hormones but i can tell you that i will get hot flashes when my bp drops. Not sure if you track your blood pressure but might pay to take it when you feel warm.

[Pistol]

22 minutes ago, MikeO said:

I know nothing about EDS or girl hormones but i can tell you that i will get hot flashes when my bp drops. Not sure if you track your blood pressure but might pay to take it when you feel warm.

I second what Mike suggests! I DO get periods of high AND low BP, and the low BP will cause a hot flash with sweating - close to what I experienced during menopause. 

[MomtoGiuliana]

3 hours ago, Sushi said:

As fast as I know, they don’t yet have a genetic test for hypermobile EDS. 

Correct no genetic test--eg blood test--but a geneticist with expertise in connective tissue disorders typically does a thorough physical exam and reviews medical info available from family members to make a diagnosis.  That was my understanding when I looked into getting tested myself years ago.

[JennKay]

Thank you all for your responses! I will try to track my BP when I get a hot flash going forward. Lately they have been happening in the middle of the night. My mom said this would happen to her during perimenopause/menopause so I just assumed it was hormonal. I didn't think to associate it with a drop in BP, but I guess that makes sense, particularly if something is setting off the vasodilation...like some weird autonomic something or another.

I will read through the older post on EDS as well

[MikeO]

18 minutes ago, JennKay said:

I will try to track my BP when I get a hot flash going forward. Lately they have been happening in the middle of the night.

Oh Jenn I get the hots all the time while i am sleeping. Kinda wax and wanes but when i do get up i will take a bp and it has been low.

I hope you can pinpoint this. 

Best,

Mike

[JennKay]

@MikeO -- sorry to hear you deal with that as well. Guess it isn't just a female issue! Do you get cold sweats at night too? Those are the worst.

But, I did have an appointment this afternoon with my OBGYN and my initial estrogen/progesterone tests are back. Only one is left outstanding since we took multiple time points over my the last month. Anyway, my estrogen is at a menopausal level/ratio and my progesterone continues to be postmenopausal. We will wait on the last hormone panel, but it sounds like HRT is a potential option for me. My OBGYN said we should address this now since I'm in my late 30s and not wait until I'm closer to 50. Crazy! 

Also, when my palpitations ticked up this past month my estrogen ratio was at its lowest point. He said it would make sense that the drop in hormones would increase the palpitations. Hopefully we are moving in the right direction here 🤞

[MikeO]

@JennKayHappy to hear you are getting some answers. I had a health care provider once tell me that the hot flashes were due to male menopause Lol! but yes i do weave in and out from hot to cold. My covers are usually a mess by morning.  

[JennKay]

@MikeO -- I am laughing 😃 and agreeing at the same time! Men don't have the same estrogen drop, but I could understand testosterone declining with age and how that reduction could be associated with hormone symptoms. 

[TCP]

I was diagnosed by a rheumatologist at my request. Based on my clinical history, examination and Brighton Scale. Link through my family is IBS and spine/neck degeneration. 

[MikeO]

10 hours ago, JennKay said:

Men don't have the same estrogen drop, but I could understand testosterone declining with age and how that reduction could be associated with hormone symptoms. 

I am sure at one point in my life i have felt hormone symptoms or has been part of the mix but when i have been dealing with multiple issues that have similar characteristics how would one know which is which. Hot flashes have been going on for 10+ years so i am sure i am over the testosterone drop.

Haha i did for a while buy into the menopause theory until  @Pistolstraightened me out and i figured out my Hot/Cold feeling is blood pressure related.