Eds Type 3 - Hypermobility - Geneticist Says It May Be Why I Have Pots

[iheartcats]

Hi all - I've been gone a bit because life has been overwhelming handling work & POTS. It seems to suck my energy and I just haven't had time to do much else.

I finally saw my geneticist and he thinks I may have Ehler-Danlos Syndrome, Type 3, Hypermobility. The cases he sees varies from mild to severe - and while mine is mild, he thinks it probably is enough to affect my blood vessels to cause pooling/POTS.

Of course, one can't say for sure as there is no genetic test for this version now. My cousin and my sister both have POTS (cousin is officially diagnosed, somehow my sister ignores it and avoids getting a DX!). My mother also has fatigue/fast heartrate often but also ignores it. I think I just have it worse enough to need medication, treatment, etc. The geneticist said it'd be unusual to see it in my family like this with no genetic component.

On the one hand, it's intersting to maybe find the link. On the other hand, I'll never get better? That worries me. But I didn't always have POTS. So is there still a chance for improvement? They just don't know.

My meds help enough I can get by, but not at 100% and you guys know how hard it is.

And since EDS is usually Autosomal Dominant, I'll definetly never be having children.

It's been a rough week.

[lillybits]

thats the same thing I was told today. just got home dont know what type I have but everything is hypermobile on me and he said that is exactly why I have pots also! he told me I have multiple dysautonomias as well as small fiber neuropathy. he said that with coq10 and l carnitine it can improve!!!!

[Maiysa]

Wow, that seems to be an every day occurrence on these blogs lately. That and mast cell. I'm hypermobile but doc didn't say anything about EDS 3, so contacted someone from the EDS 3 an said Hypermobility is the same thing. That's nice to know lillybits. I have also been told D3, but don't take the one made with shellfish, some are sensitive. I can't take Coq10. Hmm. That's a bummer. And I will check out carnitine. Didn't know that. Thanks. And Cat Lady I have 2 children and one is 30 and is healthier than a horse. The other not so much, he has Crohn's. Not sure if it's related. But maybe. Just to let you know.

Maiysa

[lillybits]

my doc is pretty sure i have vascular eds i fit the entire profile from top to bottom. even with injections of b12 and 50,000 iu of d i am still low my body isnt taking it. the L carnitine is what dr chaminski said along with the coq10. does ground flax seed and magnesium help at all with gastric issues?

[issie]

lillybits, Did you do genetic testing to find out if you have vascular EDS? That is one that you really need to know if you have it or not. EDS III or hypermobile cannot be tested with genetics.

Why does your doctor think there is a connection with vascular EDS and your uptake of Vit. D?

What type of GI issues are you having? Magnesium helps with not being able to go - if you take too much. That's how you know how much to take - when start going too much then you back off. It will also lower your blood pressure though - so you have to be careful if you have low bp's. It helps me to sleep - taking it at night.

Flax is a good fiber - and it also has estrogenic properties. But, if you have issues going pottie - be careful - start slow and make sure you will be able to move things through. Some alternative people think that it can imbalance hormones - if you have an estrogen dominance issue - and may not be so good. (There's controversial thoughts regarding this in both directions.)

Mayrisa, Some people get a sympathetic overdrive release from CQ10 and l-carnitine. If you start out slow and realize it may give you too much energy to start with - some say that it will settle down with time. I've had problems with both of them in the past. But, want to try them again. If you are allergic or sensitive to soy - be sure to watch labels.

I have a friend that has crohns and he had to have some of his intestines removed - so it was bad - he has kept it in check by using Symbiotics Colostrum and Glutithione and probiotics. He also did a major diet change. But, hasn't had very many problems in years now. One big thing was getting off of wheat.

Issie