By jen on Saturday, February 17, 2001 - 06:44 pm:

How is the distinction made between having hms and edsIII?

By heather on Sunday, February 18, 2001 - 04:38 am:

i have had a skin biopsy taken to see if i definetly have eds3 or not. i get the results this friday(23 feb). i have always been told its hms so we'll wait and see.
heather j ( i've noticed recently there is another heather posting- great name by-the-way!)

By May on Sunday, February 18, 2001 - 05:43 am:

The distinction is very difficult. There are at least 3 different opinions on this subject.

*Some experts say, if there's skin involvement it's EDS, if not it's HMS.

*Others say that HMS is EDSIII skin involvement or not.

*A third group of experts turns this around, they say that EDSIII is HMS. Thus, that EDSIII isn't EDS.

I am sorry, but if even the experts don't agree how am I supposed to know. My geneticist doesn't know either. He told me he doesn't know wheter EDSIII and HMS are different or the same, his present guidelines say skin involvement->EDS, no skin involvement->HMS. He however added that he doesn't really believe in such a rigid distinction between the two of them.

I was very pleased this month to hear that we humans turn out to have only 30.000 different genes. Let's hope this make it easier to find the ones that are messed up in our bodies. Perhaps then we will get a clear answer to the EDS/HMS-question.

By Eppie on Monday, February 19, 2001 - 10:24 am:

Actually, the National Institute of Health is asking for volunteers right now so they can map this gene that causes us all a whole lot of grief. If anyone lives near Bethesda, MD or is willing to commute, It'd be a worthwhile endeavor.

Search the web for NIH or human genome project.

By Kathie on Monday, February 19, 2001 - 12:38 pm:

If you visit the HMS website you will find an article which gives the new diagnostic criteria for HMS - The Brighton Score. These were agreed on in July 2000 and published in the Journal of Rheumatology. The new diagnostic criteria includes soft stretchy skin. They also state that a diagnosis of Hypermobile EDS does not rule out HMS (i.e. HMS cannot be distinguihed from Hypermobile EDS (formerly EDS III)). The url is http://www.hypermobility.org/diagnosis.htm

By Vicky in England on Tuesday, February 20, 2001 - 10:27 am:

Is there actually any difference in the treatment of HMS & EDS? I was diagnosed with 'pain caused by hypermobilie joints', so I don't think my rheumatologist had really heard of HMS, but reading this and other sites I think I may have EDS as I have delicate skin, bruise easily, have stomach problems ets. Is it actually worth pushing for a diagnosis?

By heather j on Friday, February 23, 2001 - 02:07 pm:

everybody- i got my results today from my biopsy. the fibres of my collegen were of poor quality and were sparse( or something like that) which means that i have got eds 3! it feels so good to have a proper diagnosis finaly- it only took 23 years after all! they gave me loads of advice and offered me an appointment for a few weeks to get my head around it and then go back with any extra questions. i can see the only specialist in britian if i'd like but i think i'll think about it. the rest of the family now have to have their legs carved to check if they have it too!!!!!!!! been there, done that. my daughter will not have the test because she's just 2 1/2 but she'll have it when shes older. she already sees the physio annd stuff though so she'll be fine. i feel happy, sad, drained and relieved. at least i know though.
heather j

By jane on Friday, February 23, 2001 - 04:06 pm:

heather,

thanks for posting! good to know. how did they test your collagen? at some point i will find a doctor to diagnose me -- till then i'm just gathering up all the bits and pieces i can about this.

thanks,
jane

By heather j on Saturday, February 24, 2001 - 02:01 pm:

jane- they took a biopsy( a sample of my skin) from my thigh and cut in two. half went to sheffield-u.k and the other wales-u.k. then they did a test on the first part to see if it was "normal" which it wasn't so they tested the 2nd part more throughly. the guy who did it was the big expert in the u.k. i now have a lovely red scar at the top of my leg.
hope this helps
heather j

By Patrina on Wednesday, February 28, 2001 - 12:21 pm:

Heather,

Do you know what the test is called? Or could you find out? My rheumatologist told me there was no test that could confirm EDS III. I have a highly flexible grand-niece (just turned 2 yrs), and would like to be able to pass on the info to my family members (and get tested myself). My niece and nephew both plan on having more children . . . .

Thanks so much, Patrina

By Lucy on Thursday, March 01, 2001 - 08:08 am:

Patrina,

My mother, brother and I, all went to see Dr. Anne Child at St Georges Medical Hospital in the department of cardiological sciences there. She did a number of tests on the three of us and confirmed that we had EDS3. There are many tests that can be performed, so I am afraid that your rheumatologist is wrong. But don't be too hard on him, it's just that this disorder is only recently getting the attention it deserves and not every rheumatologist is a specialist in connective tissue disorders - some of them don't focus on them in their training at all and only deal with rheumatic problems. Please let me know if you'd like any more information. Good luck and take care - Lucy

By Anne on Thursday, March 01, 2001 - 10:22 am:

Hi,

I'm really confused now. From reading a book I bought from the USA on EDS, it said that many forms do not have a method of diagnosis. My rheumatologist diagnosed me as EDS 3 as I have all the symptoms of HMS (including all the Brighton criteria), but I also have dental problems, awful gastric reflux, nerve involvement, rectal tears etc. etc!!..i.e. not a lot of fun! However, I was told there wasn't an actual tissue diagnosis as HMS and EDS both cause collagen differences in the skin.

Okay, so my questions are:
1. How can I get a differential diagnosis?
2. Does it make any difference as both HMS and EDS are hereditary, incurable (as yet), and the joint issues seem to be difficult to treat whichever of the labels they come under!

Sorry, if this is a bit confused, but I'm just not sure what info. to take notice of now!

Thanks for any help you may be.

Annie

By Kathie Gadd on Friday, March 02, 2001 - 09:18 am:

Current medical opinion is that Hypermobile EDS (formerly EDSIII) and HMS are one and the same thing. There is no test to distinguish between them though skin biopsy can be used to rule out Marfan Syndrome, Vascular EDS and Classical EDS. Hypermobile EDS and HMS are treated/managed in exactly the same way.

By heather j on Friday, March 02, 2001 - 01:49 pm:

this whole thing is very confusing, i agree-firstly there are different doctors telling us different things and we are all telling each other different things too. the thing is we can only go on what our experinces are so try not to take too much notice of any one person, including me! i can only give advice on what i know/have been told. so here goes-i don't know what the official name for the biopsy is but i'll try and find out when i see my g.p and he looks through the notes sent through by the geneticist.secondly it's easy to blame drs about this and that but they are only human and can't know everything about everything. the reason i was told that i needed to know about the difference between hms and eds was because its a different condition but not everyone says this! i think that the additional problems are more to do with eds than hms as hms is more just to do with joints and stuff. also there is a chance that my eds could have caused the problems i had with my pregnancies and i want every piece of info i can get before my daughter gets older.also- my daughters physio is NOT managing her eds in the same way as when we thought it was hms. there are some differences in her treatment. knee pads for when shes tired and walking on her knees instead of her feet to protect them from bruising etc. and lastly my results said that i didnt have eds 1,2,5 or 7 but did have 3.my collegen has hardly any fibres and they don't work.hope this helps but doubt it does!!!
heather j

By Annie on Tuesday, March 06, 2001 - 07:36 am:

Hi Heather J,

Thanks for posting your take on the EDS 3 vs HMS situation, and your experience of testing for diagnosis. I would be really grateful if you do find out what the biopsy test you had is called.

I realise the whole diagnosis situation is variable and dominated by differing opinions. I guess it just helps to know more about some opinions on these differences, but also for me to understand why perhaps I was told I had EDS and not HMS. Apart from all that, it is good to be able to explain to others what's wrong with me...i.e. why I have gastric, dental and nerve-realted probs. as well as skin, joints etc. etc.

Hope this makes some sense.

Annie

By heather j on Wednesday, March 07, 2001 - 04:39 am:

annie- it makes perfect sense. i'm at the drs on monday so i'll have a word
heather j

By Annie on Tuesday, March 20, 2001 - 10:17 am:

Heather J,

Just wondering if the doctor told you what the biopsy was called.

Thanks,

Annie

By heather j on Sunday, March 25, 2001 - 08:29 am:

annie-my notes still hadn't come through from the geneticist- i'm due to visit my g.p again soon for copies of the notes.
i'll post back later
heather j

By heather j on Sunday, April 08, 2001 - 01:21 pm:

annie- aparently there is no specifc name for the biopsy! it's just a skin biopsy. i know thats not much help, sorry
heather j

By Barbara on Thursday, July 12, 2001 - 03:43 pm:

Heather,

The skin biopsy does not test for hypermobile type EDS (type III). THe skin biopsy is a test for Vascular EDS (type IV). The defective collagen in Vascular EDS is called "type III collagen" but it is definitely NOT type III (hypermobile) EDS. I strongly recommend you seek clarification from your doctor about which type of EDS you have based on the biopsy.

More information on the biopsy is available at:
http://www.pathology.washington.edu/clinical/byers_new.html
** This site seems to be down at the moment. I hope this is just server problems at the University because the whole pathology site is down. **

Info on EDS Types and Diagnostic Criteria
http://www.ednf.org/articles/Nosology.htm

http://www.ednf.org/articles/new%20nosology.htm

http://www.ednf.org/articles/types.htm

http://calc.med.edu/EhlersDS_4.htm

-Barb