Hypermobility syndrome

GlasweJen

I think I'm just weird lol! I have blood clotting problems too which doesn't fit with any condition they know. I a, from a Jewish family and they think I have a variant of a type of dysautonomia exclusive to that ethnicity but not the full blown version because id be a lot worse if I had that.

Trialia

GlasweJen wrote: »

I think I'm just weird lol! I have blood clotting problems too which doesn't fit with any condition they know. I a, from a Jewish family and they think I have a variant of a type of dysautonomia exclusive to that ethnicity but not the full blown version because id be a lot worse if I had that.

They're not as familiar with EDS as they think, then, because blood clotting problems can also be linked to EDS, particularly platelet aggregation failure. Is that what you have?

GlasweJen

It's Von Willebrand's Disease Type 2(B)

Trialia

GlasweJen wrote: »

It's Von Willebrand's Disease Type 2(B)

*nods* Sounds about right... If you check the Gene Tests article on EDS, you'll see that sometimes VWD and EDS get mistaken for each other because of the blood clotting and bruising traits. Not that I'm saying that they're mistaken in you, just that the two conditions can be really similar in some ways.

GlasweJen

I think they gave up ages ago trialia. But I do get some seriously impressive bruises.

Olokia

GlasweJen wrote: »

But I do get some seriously impressive bruises.

I get weird random bruises that I have no idea how they got there. My OH wants me to come to Airsoft with him (like paintballing but with BB pellets) and I told him no way because I will have so many huge bruises that last far too long.

I went paintballing before I realised I had EDS and I had one bruise the size of my palm that lasted about 6 weeks.

ecoelle

Hi, just popping in to say hello. Bit of a long story...

sister started getting various aches and pains about 10 years ago, finally diagnosed as EDS last year, then found out cousin also has it, i was pregnant at the time and was given ECG but all normal. Have now had baby with emergency c-section due to complications. I have never been diagnosed with EDS but have booked an appointment with my doctor for this afternoon as i had a virus in november, one of those 24 hour fluey things. Following that started with pain in my left thumb, like pins and needley wierd feeling meaning it really hurt to put pressure on it. This has prgressed now, asnd the other day as i lowered myself intot eh bath my thumb got stuck, don't know if it was dislocated, or spasm, or what but it wouldn't move and i had to 'pop' it back into place. Just starting to wonder if maybe i have EDS too. It's a really scary thought. I was inetersted to know how others found they had the syndrome. Was it diagnosed because other family members had it, or were you the first to be diagnosed in your family? I didn't know it was even in our family genetics until after i was pregnant, now i worry about my daughter.

Just wondering how to apprach it with the doctor, i have heard that it is quite a difficult thing to pin down a diagnosis on, any help, thoughts, support, all welcome:)

Mikeyboy01

Hi,
I am a bit concerned and worried reading all your posts. My son who is now 12 was diagnosed 3 years ago with Hypermobility it was linked to his Dyslexia and a few other things. He is perfectly healthy apart from that and has not suffered from anything else and is is main stream school. He was assesed at the hospital and went on a course for co-ordination problems which helped him greatly. He has not and does not suffer from pain and just get on with life.
I would be grateful if somone could enlighten me and put my now concerns at ease thanks

ecoelle

Trialia wrote: »

For the people who have said you can have asymptomatic hypermobility syndrome - i.e. no problems at all - no, you can't, because if you have asymptomatic hypermobility, meaning without pain or any other symptoms, it is just hypermobility, not hypermobility syndrome or EDS-H. There's quite a noticeable difference. :P

this is a really good point.

Olokia

ecoelle wrote: »

Just wondering how to apprach it with the doctor, i have heard that it is quite a difficult thing to pin down a diagnosis on, any help, thoughts, support, all welcome:)

I found it difficult to get the doctor to take me seriously. One doctor even told me "You DO NOT have Ehler's Danlos Syndrome." (after he googled it and chose one of the symptoms to test me against).

I found it easier after my brother was diagnosed because as I also had some symptoms, it was highly likely I had EDS so they couldn't argue as much with me. I was fed up of local doctors and googled EDS specialists and found two, One in Sheffield and one in London. I chose one and took the details to my doctor and asked to go to the specialist. They agreed so I got formally diagnosed recently after 6 years of trying to find out what was wrong with me, 2 of those suspecting EDS.

I would mention that your sister and your cousin have been diagnosed with it and because of the genetic link and the recent problem with your thumb, you would also like to find out if you and your daughter have it because the earlier you find out, the earlier you can start protecting your joints.