Diagnosed With Ehlers-Danlos Syndrome (Eds)

[monica]

Thanks Chaos for the Link to this book..I'm going to get it

This is the most updated article I found on EDS-Hypermobility type( though looks like it doesn't mention MCAS?!)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/

Also, liked this article for managing pain and fatigue in EDS/Hypermobility syndrome:

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.35483/full

[Chaos]

Monica- Thanks for the links to these papers. Have the second one but had forgotten it (got to love brain fog) but hadn't seen the first one. Looks really good so I'm looking forward to doing a more in-depth read of it. Thanks a lot!

[rach73]

Hiya

just thought I would add these two links

http://www.hypermobility.org/beighton.phphttp://www.hypermobility.org/beighton.php

http://www.hypermobility.org/diagnosis.php

I saw on facebook - so how true it is I dont know? is that EDS should be diagnosed if there is a problem with local aneasthetics, bjhms doesnt have this. But as I say who knows?

Rach

[monica]

Rach,I've read about it too. I've had local anesthetic just once long time back and it worked on me, I think. On the other hand, pain-killers of any kind just don't work on me at all. I have tried almost everything and nothing works. I wonder if other people with EDS have the same problem?

[brethor9]

problems with anesthetic can be an issue with mast cell also. I have always had a hard time with these and any type of opioids. When I had my son, I had 3 epidurals, a local and finally a general delivery because nothing would work; doctor had never seen anything like it......I love being an enigma ...... NOT!

Bren

[tigerbomb]

I've also heard criticism of the Beighton score too. It's ok for a quick screening, but isn't the whole story. Like Chaos mentioned, it ignores the large joints. Plus, women tend to be more flexible than men, and younger people are more flexible than old people - regardless of whether they have a connective tissue disorder or not. If a muscle is very tight, it can mask hypermobility in a nearby joint. I actually have several HYPOmobile areas, because my muscles are so tight and knotty from trying to support the unstable joints. Osteoarthritis is also very common among people with EDS, and it can decrease mobility too.

Altruism, I'm sorry this is so confusing. I know that Dr. Byers is a top VEDS expert, but I'm not sure that he's the #1 EDS expert overall. Many other EDS experts (Dr. Grahame, Dr. Tinkle, Dr. Francomano, Dr. Lavallee, Dr. Bird, Dr. Levee, etc) consider HEDS and BJHS to be clinically indistinguishable. They also tend to say that it's underdiagnosed - not overdiagnosed. So, I might take Dr. Byer's opinion with a pinch of salt? I truly hope your VEDS test comes back negative - BTW, other EDS types can have bleeding issues too. VEDS has a much higher risk of uterine rupture though.

Also, I just wanted to tout the EDNF's support community: http://www.inspire.com/groups/ehlers-danlos-national-foundation/. You do not have to be officially diagnosed to join. The people there are incredibly nice and informative, and more than happy to answer any "is this normal for EDS?" questions.

[rach73]

Hi,

Just to go back to my earlier post about local anesthetics, they dont work properly on me. I need larger than normal doses to get numb and then I burn through it at a shocking speed. Ive had part of my toe nail removed when the local had worn off - I didnt know I had EDS and the drs didnt believe me despite me jumping a few times! I also had a lumbar puncture done after the local had worn off as the junior dr couldnt hit the spot!

Anyone that says people with EDS have a low pain threshold.....try the above procedures without a local!

[~elizabeth~]

He said I do not have EDS, just some more mobility in my joints, but he said most people do have it too (he did the thumb to wrist thingy in front of me). He said that there will be a conference in Ontario (?) this year where researchers from all over the world will try to organize and change the EDS classification. He says it's overused now and not as many patients have EDS, just BHS. ...

Anyway, I think the whole EDS and BHS thing is a mess. It needs to be reclassified. I hope they do it soon.

There is no difference between EDS III and BJHS. There is a difference between people who have a couple of hypermobile joints (which includes my husband who scores about 4/9 but has no other symptoms or family history) and EDS, but no difference between the other two. Prof Grahame believes they are the same. The Beighton scale tests give a good initial indication of whether you are likely to be a good candidate, but full diagnosis requires a full examination by someone well-enough qualified to tell the difference and establish the full context. Prof G spent a whole hour testing all my joints (not just the Beighton ones) but all the others as well, taking a full family health history, testing proprioception, skin flexibility/transparency and load of other things I forget now. I already had a diagnosis of POTS, sicca and a family history of orthostatic hypotension, peripheral neuropathy and connective tissue ills, so we didn't really go into that side of things. I don't think the EDS label is being over-used, rather that historically the condition has been seriously underdiagnosed (being as I am the first in my not-terribly-well family to have been picked up with the condition, as it isn't of the kind that causes dislocations etc)

From what I have read, it's probably unlikely that there will be a genetic test for EDS III, as whenever samples have been taken, there are never any common genes, suggesting that it is highly heterogenous, genetically. When ever we go to an EDS gathering, most people have type III, but the individual familial variations are very wide. In my own family, the hypermobility aspect is relatively low but the neurological involvement quite high (small fibre as well as autonomic) whereas in other families there are severe dislocations but no POTS etc. Which is why it is important to a wide range of diagnostic criteria into account when making a diagnosis.

[HopeSprings]

When ever we go to an EDS gathering, most people have type III, but the individual familial variations are very wide. In my own family, the hypermobility aspect is relatively low but the neurological involvement quite high (small fibre as well as autonomic) whereas in other families there are severe dislocations but no POTS etc. Which is why it is important to a wide range of diagnostic criteria into account when making a diagnosis.

Elizabeth - can I ask what type of EDS you have? Also, are you saying there is a relationship between EDS and small fiber neuropathy?

[Altruism]

Elizabeth, I agree with you. I took his words with a grain of salt and I have scheduled another appointment with dr Byers to discuss the whole EDS/VEDS/BJHS confusion. I will keep you all in the loop.