a matter of semantics?

[Guest guest]

> She says that while some people thing hypermobile joint syndrome is part

of

> EDS she personally (as well as all the rheumatologists in Oklahoma) do not

> feel that it is truely EDS.

> What do all of you think of her disagreeing with the EDS and hypermobile?

>

> Does it matter as long as she is properly treating the HJS as such and I'm

> getting proper treatment?

> Peggikaye

I'm in Missouri, and the doctors I've seen with my son would agree with your

doc. They think there is a difference between hypermobility syndrome and

EDS III (they still use this designation instead of HEDS). But, the

rheumatologist and the geneticist both said that Graham could have EDS. The

geneticist says he thinks it depends on whether you have dislocations or

not- since my son does, then he may have EDS. I don't even bother to

discuss it with them, I just want someone to take Graham's problems

seriously, and they can call it whatever they want.

It does sound like your doc is taking you seriously at least, so I would

give her a lot of credit for that! My rheumatologist, who first dx'd my son

as being hypermobile (the previous doctors thought he had a brain

dysfunction), wasn't at all interested in continuing to see Graham, saying

that his pediatrician could handle any problems he had. Well maybe she

could if she seemed to believe he had a joint problem, instead of a neuro

problem. I rely mostly on Shriners hospital at this point, they are

wonderful, and we can see the same geneticist there that we were referred to

anyway. Plus we don't have to worry about our insurance problems with them.

The breast reduction made me laugh too! I only have a dx of 'connective

tissue disorder', but I have trouble with my shoulders when I sleep, (and my

hips too)- my arms get tingly, and I often seem to pinch a nerve during the

night. But believe me - the weight of my boobs isn't the problem! Wonder

what they would tell me to do? LOL.

Supposedly someday soon there will be a test for HEDS, and then I guess

we'll get some answers, and more likely some new questions.....

L. mom to Graham

[Guest guest]

Couldn't have said it better myself Helen! And as always, you make me smile.

I will write more later.

Love Lana

[Guest guest]

Peggikaye

This is a matter of some interest to me. I have also been diagnosed with

Hypermobility Syndrome HMS... BJHS, HJS, or any of the other 2 hundred different

names that this condition has been given.

I was under the impression for some 7 years, that I had Elhers Danlos. It was

pointed out to me some years ago and after following an information trail... it

certainly seemed like an answer, for all the weird things that I had experienced

with my joints, over the years growing up. However.... It was discovered and

explained to me, by the geneticist, that there was a huge lack of evidence in my

family history. There was not enough skin involvement (ie.... not velvety and

not stretchy enough?) And none of the organ manifestations (Heart, eyes,

etc...) for it to be EDS. And none of the body habitus that is typical of

Marfans Syndrome. So I " just " have straight up Hypermoblity Syndrome. (Like my

asthma wasn't enough to fill my days with happiness?!??!) I was devistated at

the time... because I thought I was going to be brushed under the carpet, like I

had been, so many times before. However, that wasn't the case. I was passed on

to a wonderful Physiotherapist, a Fantastic Specialist and an Orthodic team,

second to none. I do feel a little alone here in Australia, because I don't

know anyone else over the age of 25 with HMS. All children are Hypermobile....

but they usually begin to grow out of it by their late teens. Most of my

problems didn't even start, until I was in my mid teens and have progressively

gotten worse. <shrug> First my right patella. then my left elbow, then my left

hip and so it goes..... now most of my body is effected, and either dislocates,

grinds or subluxes.

And No I don't think it is semantic. I think if it can be recognised by the

medical community, as being a separate syndrome, then it should be able to be

recognised by others as a separate syndrome. I do not have as many dislocations

as many people here with EDS. I do not have the servere skin tearing and

sensitivity that EDS sufferers have. I don't have the heart, vascular and/or

eye problems that most EDS sufferers have. There are many things in the list,

that I simply cannot relate to. I don't even seem to suffer the pain, as others

with EDS do. Whether this is because it is again a different syndrome or

because I have different pain receptors than others... remains to be seen.

There was a time that I was going to leave this list.... because I didn't feel

able to contribute and sometimes I didn't feel valid in being here, because I

don't feel I suffer as much as many here..... but then......

......In saying all of this. There really is so little material out there, in

the medical community or online about Hypermobility Syndrome, as it has been,

for so long, veiwed as a symptom or a stage, NOT a condition. It is a NORMAL

stage of childhood development, and it WAS / IS a symptom of other connective

tissue disorders, and therefore it was not veiwed as interesting enough to study

or research on its own merits. But there is information coming out now and even

new diagnostic tools. Information that, again, suggests that it IS being

recognised as a separate condition. That doesn't mean that the information that

we find here in the mailing lists, or on other EDS sites is any less valid, the

fact it.... for the most part.... ITS ALL WE HAVE!!!.

My PT openly admits that she calls me an " EDS Variant " , because the only

information that she can find to treat me, comes under the heading for Elhers

Danlos. <Smile> And when it comes to people knowing, what I am feeling.....there

are none more qualified, than those, who live with similar joint and pain

problems.... the people on the lists..... In terms of qualifications, all who

live with this every day, are far more experienced (IMHO) in EDS and HMS or

whatever name you wish to give it.... than any doctor can ever be. They

(doctors) may have studied it..... they may have a PHD..... They may have paid

lots of money, for their learning..... and they may have written papers on

it.... But the truth is..... WE LIVE IT EVERY DAY.

I guess we can each have our own bit to share on subjects and although I may not

always be able to relate to everything that a person with EDS is going through,

because I don't suffer as much as they are going through..... Luckily..... They

usually know what I am going through. Does that all make sense?? <Smile>

Anyways.... I wish you luck in coming to terms with the EDS/HMS/HJS semantic

issue. It has taken me quite some time to come to terms with it myself.... and

mine is just one of many opinions, on the subject and I am not suggesting for a

moment that mine is right.

Hugz............Helen

************************************************************

Well ... I went to the rheumatologist today..... Not sure what I think. I agree

with her action plan. She spent 90 minutes with me. But I am not sure what to

think of what she said about dx. She says that while some people thing

hypermobile joint syndrome is part of EDS she personally (as well as all the

rheumatologists in Oklahoma) do not feel that it is truely EDS.......

[Guest guest]

PK,

>Well ... I went to the rheumatologist today.

>

>Not sure what I think. I agree with her action plan. She spent 90 minutes

>with me. But I am not sure what to think of what she said about dx.

>

>She says that while some people thing hypermobile joint syndrome is part of

>EDS she personally (as well as all the rheumatologists in Oklahoma) do not

>feel that it is truely EDS.

The specialist EDS docs here and in Europe are going the opposite way.

They are more certain that the various hypermobility flavours ARE the

same thing and that the tag given depends on the severity at diagnosis.

I was diagnosed EDS Type III in the mid 80's. I was then told that was

wrong, I had benign joint hypermobility. My current specialist said the

BJHM was incorrect and diagnosed me with HEDS (old Type III) and the

geneticist at the Philly conference confirmed this. At least they all

agree now.

>She said the EDS on line groups would be good for support and learning, but

>she feels that Hypermobile Joint Syndrome is unrelated. So I guess unless

>there are genetic tests that will link them, she can't be convinced.

>

>She gave me some suggestions about how to function, sleep, and general life.

Good. Whatever the diagnosis and its correctness (is that a word?),

these things need help. If things don't help, let us know. I'm sure we

have a few useful ideas.

>She has ordered a full body bone scan because she feels there is probably

>more inflamation than #1 what I'm letting on to because I'm so used to the

>pain, #2 what the xrays show ... in other words inflammation rather than

>degeneration?

Don't be surprised if you have early degeneration as well. My OA was

diagnosed when I was 32 and I had symptoms before then. I'm allergic the

bad news.

>We talked about sitting and how painful it was at the hospital. She examined

>my hips, and I heard/felt a very loud POP and she said " well, here's the

>problem, your hip was sublexed (sp? did I spell that right?).

Subluxed/subluxated. Usually refers to a joint sitting in the joint

socket, but not correctly. I can reset mine by wiggling (carefully).

This is a pointer to HEDS IMO.

>It HURT! But now it's not as bad as it was when I got up this morning. I told

>her that it's a chronic problem, I'm never comfortable with sitting forward

>with my feet flat on the floor. She examined me the rest of the way. Then

>told me that my spine is so loose, and torso muscles so weak from the

>myasthenia that sitting in a 'normal' position probably puts too much stress

>on the muscles and joints.

Those lax tissues cause so many problems. The only thing supporting my

spine is my will power. No wonder it is curving. The myasthenia just

complicates it further. I imagine the EDS and MG symptoms overlap making

it harder to determine which condition is causing what problem.

>Every single joint is hypermobile. I thought my elbows were ok ... she looked

>at me funny and extened her arm. OOPS.

I thought my thumbs were normal until I compared them with some friends

from work! In EDS terms they are not that mobile, but comparing me to a

normal person is a different matter.

>She's not sure what to do about my shoulders and sleeping. Her suggestions

>will help with my hips. The only suggestion she had for shoulders was to get

>a boob reduction. (I started laughing, she smiled patiently and said she

>wasn't kidding)

>Then explained that the weight of my boobs when I sleep on my sides is

>pulling one shoulder out, then putting the shoulder on the bed side to an odd

>angle increasing the likelihood of a dislocation or subluxation (how DO you

>spell that?)

Spelling correct. Use pillows for extra support. They do help. What

about night time splints? To hold things in place? You really need to

learn to sleep on your back. Of course, that means your breasts end up

in your arm pits. I'm top heavy, too.

>Anyway ... she's ordered TONS of labs. She's going to call my neuro and give

>him what for for trying to pull me off the Imuran (I take it for my

>Myasthenia Gravis, he wants me off it because of the cancer risk that's less

>than 1% ... I want it because it's helping the MG and she wants me on it

>because it's helping the MG which helps my joints AND since 30% of MGers wind

>up with Rheumatoid Arthritis and Imuran is used in RA, she'd like me to stay

>on it to prevent the onset of RA ... but she would not put me on it FOR that,

>it's just a side benifit)

Despite the diagnosis disagreements, this sounds like a good doctor.

Hang onto her.

>She also talked about 's joints and what I need to discuss with his

>pediatrician.

Good.

>She's ordered the bone scan and I go back in a month.

Please let us know the results.

>What do all of you think of her disagreeing with the EDS and hypermobile?

>Does it matter as long as she is properly treating the HJS as such and I'm

>getting proper treatment?

As long as you get all the treatment you need, I do not think the

diagnosis matters FOR NOW. Once you start needing surgeries, you really

will need that correct diagnosis. EDS makes the surgery more

complicated.

--

Fuller

Winchester, England

HEDS (VEDS overlay), FMS, OA, IBS, lumbar scoliosis, tinnitus, some hearing

loss, stomach problems, chronic depression, multiple allergies, asthma, some

undiagnosed inflammatory condition....

Please excuse any typos or odd phrases. I am talking to the Dragon.

[Guest guest]

Dear Peggikaye,

The first thing that caught my eye is that she wants to test 's

joints - is this your son? If so then my question is if she thinks you have

HMS and not EDS why would it be inherited by your son? Didn't know HMS could

be inherited.

Also - you don't state what it is that's making her rule out EDS. Is it

the typical - you don't have stretchy skin so it's not EDS thing?

Personally I would get thee to a Geneticist. EDS is a genetic condition

and hence a Geneticist is the speciallist here.

To get the dx or not is a personal decision. If you feel this rhuemy is

doing enough for you and you like her and are satisfied then fine. Even if

you did get a dx by a Geneticist it doesn't mean that this rhuemy would

accept it.

Hugs,

HEDS, New Jersey, USA

[Guest guest]

In a message dated 10/30/01 12:44:14 PM Central Standard Time,

agfuller@... writes:

> Those lax tissues cause so many problems. The only thing supporting my

> spine is my will power. No wonder it is curving. The myasthenia just

> complicates it further. I imagine the EDS and MG symptoms overlap making

> it harder to determine which condition is causing what problem.

>

The only reason they aren't blaming the MG totally on the loose joints is

that this has been a problem since infancy. It was a big deal during infant

and toddler years. A irritation during teens and early 20's. When the MG hit

(age 24) it started bringing the problems back in spades ... but it took

close to 12 years for everyone to realize my problems were not related soley

to MG.

Pk

[Guest guest]

In a message dated 10/30/01 12:44:14 PM Central Standard Time,

agfuller@... writes:

> Spelling correct. Use pillows for extra support. They do help. What

> about night time splints? To hold things in place? You really need to

> learn to sleep on your back. Of course, that means your breasts end up

> in your arm pits. I'm top heavy, too.

>

Yea, but they won't go into my armpits ... they plop back up and stay on top

of my chest making breathing hard ... it's very hard to breath with 10 lb

bowling balls sitting on weakened chest muscles LOL

Also MG interferes here ... I choke on my own saliva at night, so the neuro

says no back sleeping (pretty standard instructions for an MGer).

I talked with my PC doc today about all this, she said " well, if you stop

sleeping look how much you'll get done'' <G> She was kidding. She's thinking

too. She's got a good friend from medical school that went into unusual

orthopedic problems but in another state, she's going to call her tonight and

ask her if she's got some suggestions.

Peggikaye

[Guest guest]

>Yea, but they won't go into my armpits ... they plop back up and stay on top

>of my chest making breathing hard ... it's very hard to breath with 10 lb

>bowling balls sitting on weakened chest muscles LOL

Well, mine go into my arm pits! Something for you to look forward to.

>Also MG interferes here ... I choke on my own saliva at night, so the neuro

>says no back sleeping (pretty standard instructions for an MGer).

Due to my spine, I cannot lie flat on my back, so I have a hospital type

bed with an elevating head. This allows me to sleep on my back in

reasonable comfort without having my stomach go ballistic and without

inhaling my saliva and causing an asthma attack. Given you can't sleep

on your back ....... um, maybe you need to look into a mattress that

gives more but still supports you well? What about trying one of those

heat moulding mattresses? Water bed?

>I talked with my PC doc today about all this, she said " well, if you stop

>sleeping look how much you'll get done'' <G> She was kidding. She's thinking

>too. She's got a good friend from medical school that went into unusual

>orthopedic problems but in another state, she's going to call her tonight and

>ask her if she's got some suggestions.

Maybe that will generate a few idea, too.

--

Fuller

Winchester, England

HEDS (VEDS overlay), FMS, OA, IBS, lumbar scoliosis, tinnitus, some hearing

loss, stomach problems, chronic depression, multiple allergies, asthma, some

undiagnosed inflammatory condition....

Please excuse any typos or odd phrases. I am talking to the Dragon.