I Dont Agree With Eds Hypermobile

[andybonse]

Hello!

I just wanted to ask those with EDS type 3, what type of bends you can do. My Professor said I have EDS type 3 or Hypermobility, obviously both are the same?

NO family history of EDS

Dad is healthy at 64 but has mitral valve prolapse, he didn't have it throughout his life though

Mum is 55 Healthy

2 brothers 30 and 34 both healthy as pie

me = what went wrong!!!!

I had no symptoms until 17 and they didn't get bad until now 22. My only symptoms is Dysautonomia/POTS, no joint paint or dislocations etc.

Do I look bendy as far as freaky to you?

1)http://i39.tinypic.com/awewz7.jpg

2)http://i40.tinypic.com/280vdbp.jpg

3) I can also pull my thumb to my wrist, hurts a little tho!!

I used to be veryyyy fit and growing up always stretching at karate etc, maybe thats why I can do the above?

My diagnosis is:

Autonomic Dysfunction

EDS type 3

Mast cell activation disorder(not yet confirmed)

So, my general question would be: What if I dont have EDS and in fact there is another cause for this.

Is there any particular tests you would recommend based on the above that I should/could have done?

I'm not asking for any medical advice just opinions.

I have read about anti-nuclear blood tests etc.

[lejones1]

Do you have any family history of hypermobility at all? Or any family history of things associated with EDS, aside from your dad's MVP?

Who diagnosed you with EDS? Was it an expert? Do you feel like all other possible causes causes have been looked at as well? If you don't, then definitely keep looking! Even if you do have

Personally, I have some sort of immune-mediated POTS and SFN. But my POTs specialist also wants me to be evaluated for EDS because I'm hypermobile and have a family history of hypermobility. He doesn't think finding one cause rules out secondary causes and I definitely agree (although I'm sure some doctors are happy to stop searching once they think they've found a simple answer!). So don't give up!

I don't know a lot about EDS but from what I understand the inheritance pattern isn't always super clear. I know 2 people with POTS definitely caused by EDS and neither has a family member with EDS but both have family histories of EDS-like symptoms. I think the genes that cause the hypermobility type can cause also cause benign hypermobility so it might show up that way.

I'm not sure if your pictures are "freaky" or not. I can do those as well, but that doesn't mean they're normal. Were there certain things you could do with joints that made your doctor think you had EDS?

[DADofPotsSon]

Being a family historian and novice genealogist, I can find a lot of issues in previous ancestors that are quite random. Though in my family my grt grandmother had severe EDS but was call rheumatism on her death certificate, but my Dad and a Late Aunt provided very good descriptive accounts on what they saw allowing a verification of EDS. I was very close to my grandmother and by what i have researched and her descriptions she clearly had EDS, and in her 30's thru 40's clearly had POTS. Dad is 86 and is in the last few months of life, did have minor problems with Hypotension and some occasion syncope. I am sort of normal if that is possible, but only deal with Raynauds, My son#2 has EDS, NCS/POTS and some seizures due to low blood pressure.

Now i have also researched out to 4th cousins and have by elimination clearly determined what ancestor where the EDS came from. He did come from Heddeshiem in Prussia. There are more than 200 descendants of him and on very rare occasions EDS does appear or minor symptoms of EDS.

DADofPotsSon

[Katybug]

As hyper mobility goes, I don't think you will find many people that would be able to flex the way you are in those pics. I have eds and many of the things I can do, I always assumed everyone else could as well but it's not so. Also, the only qualifying symptoms and signs to dx eds 3/hyper mobility type is not just flexible joints or dislocations. There are quite a few other characteristics such as high soft palates or blue schlera. You can find a complete list of diagnostic criteria for each type of eds at www.ednf.org. It is also quite common to find people that have eds also have autoimmune issues. It seems unclear as to what the exact connection is other than both have a genetic component.