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Author Topic: My Odd Bod status has become some what official  (Read 4162 times)

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Offline rhea

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My Odd Bod status has become some what official
« on: January 21, 2003, 11:38:55 PM »
Hi Fellow Odd Bods,
I saw the rheumy the other day and she thinks I have either EDS, Marfans, or a cross between them (EDS with marfaniod habitus).  She re examined me to make sure she didn't miss anything and said I had very lax hypermobile joints.  I told her about a couple of the tricks I had learned (thank you M's odd bod gallery! LOL) and showed her the bendy finger trick.  You gals should have seen how delighted she got!  LoL!  WOW, I really made her day there LoL.  So anyways she is still working on getting me in to see a geneticist for a diagnosis.  She said she does have the training in rheumatology to diagnose me, but she does not deal with EDS much so she wants to make sure I get diagnosed by someone who knows it well.  If this clinic she is trying to get me in is too full to see me I have emailed the canadian eds association (thank you shaz for that awesome link) representative for a list of geneticist etc.. that deal with eds a lot.  So just in case that clinic won't take me, I'll have a back up.  

So I guess this officially initiates me into the odd bod crowd lol.  Although eds is not something I want to have, I am just so happy that I am getting near a diagnosis.  And the Kyphoscoliosis Type of EDS with the marfanoid habitus seems to really fit.  Hmm its funny how much a name for all of this means.  I guess for me it validates it all.

Take care fellow odd bods!  I'll be around some more once I've recouped from my 11 hours in the car yesterday.

(((hugs)))

rhea
7 yrs of knee troubles (maltracking, maybe plica).  
Finally found wonderful OS(#4)!
Diagnostic scope+biopsy schduled for sept 23,2003  
HMS/EDS III
Chronic joint pain,subluxations,microtraumas...

SL99

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Re: My Odd Bod status has become some what officia
« Reply #1 on: January 22, 2003, 02:34:34 AM »
Welcome to the Wierd, Whacky World of Odd Bods Rhea! Although I'm sorry that you need to join of course... :-/

But at least you know the kind of thing you're up against now and that's often half the battle. Take care Darl and remember we fellow Odd Bods are here for you whenever and whatever you need, from advice to a great big hug!  ;D

Love....Jo
xx

Offline Shazinoz

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Re: My Odd Bod status has become some what officia
« Reply #2 on: January 22, 2003, 03:20:41 AM »
Isn't it amazing how a simple name can make all the difference, even if it makes no difference to treatment it is just a validation of all the yuck you hae been feeling all your life and an explaination as to WHY !.
Congrats on a partial diagnosis Rhea, and I am glad the CEDA link helped.
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Offline Shazinoz

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Re: My Odd Bod status has become some what officia
« Reply #3 on: January 22, 2003, 01:48:12 PM »
a Hypermobile dance 9that would be what my hubby/aprtner would call my "jelly teddy dance" as the reckons i look like i am made from jelly :)
It is logical that the joints banging around causes pain, yes in us Hypermobile this is called Micro-trauma and it occurs in us almost constantly as our joints moe beyong the normal and as you said bang around, this also occurs from the numerous sprains etc that we get all the time. I don't think I have marfanoid habitus (but then I guess I have never really checked it out or had it checked out)
Don't you love the term "benign used to describe something that can impact so heaily on our and other peoples lives.
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

SL99

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Re: My Odd Bod status has become some what officia
« Reply #4 on: January 23, 2003, 04:07:26 AM »
Although I'm not classically Marfaniod tall, I do have certain Marfan characteristics such as the pigeon chest and depressed sternum, very long limbs and exceptionally long fingers ( they are longer than my both my parents!) and toes ( my big toe is as long as an average thumb!)

I also have the wing span thing, having a ratio of 1.03 which is abnormal. My body is tiny compared to my legs and arms - hence why I look like a goblin!  ;D

As you know I'm still waiting on certain test results and consults regarding a final diagnosis and ruling out actual Marfan syndrome, but its probable that I have EDS VII Arthrochalasia type with marfaniod changes apparently. Catchy title don't ya think?!  ;)

Hope my fellow Odd Bods are doing okay.

Love......Jo
xx
« Last Edit: January 23, 2003, 04:10:19 AM by SL99 »

Offline rhea

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Re: My Odd Bod status has become some what officia
« Reply #5 on: January 24, 2003, 03:06:43 AM »
Thanks guys for the initiation!  Wowee, lets sing the odd bod song loud and clear

"FOR SHE'S A HYPERMOBILE-FELLOW!
FOR SHE'S A HYPERMOBILE FELLOW!
FOR SHE'S A HYPERMOBILE FELLLLL-OOOOW!
WHICH NOBODY CAN DENY!
WHICH NOBODY CAN DENY!
WHICH NOBODY CAN DENY!
FOR SHE'S A HYPERMOBILE FELLLLLL-OOOW!
WHICH NOBODY CAN DENY!"

Sorry, I couldn't resist LoL. :D


It just really does feel good that there is a freaking name for all of this junk!!!  

Take care everyone, and protect those odd bod joints. I know I already managed to wrench my crappy shoulder for the umpteenth time having the forbidden bath, and I even managed to flare up my finger joints by using a wash cloth.  Jeez, who knew bathing could be so hazzardeous LoL.

Big *careful* (((hugs)))

:-*

rhea
7 yrs of knee troubles (maltracking, maybe plica).  
Finally found wonderful OS(#4)!
Diagnostic scope+biopsy schduled for sept 23,2003  
HMS/EDS III
Chronic joint pain,subluxations,microtraumas...

Offline Shazinoz

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Re: My Odd Bod status has become some what officia
« Reply #6 on: January 24, 2003, 04:06:31 PM »
Yes bathing should carry a health warning.
If I hadn't of had a bath that fateful night last June then I wouldn't have bent my leg like I did and I wouldn't have trashed my Knee AGAIN like I did. ANd I wouldn't be looking at my knee possibly being like this for now and ever more either as they pretty much are ruling out a further ACL reco as it will simply fail again like the last 2, and likely damage my good knee by taking the new graft from it and as the new graft would be my own fault connectie tissue/collagen I can see the valid point of this. Pitty they don't do allografts here in OZ but then Hey knowing this body I would probably reject the ligament anyway and be worse off thant now.
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Offline wriggley

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Re: My Odd Bod status has become some what officia
« Reply #7 on: January 25, 2003, 10:58:19 PM »
hi peeps

glad here you've finally got a label, rhea.  My doc's just think im a whinger which is helpful! >:( but i have a really bad cold at the minute and feels like somebody stamped on my fingers and elbows!  This is bad!  hope you guys are doing better cuz it stinks this side of the pond!

wriggley ;)
Paraplegic(inc. L5) due to a spinal cord bleed along with previous knee and hypermobility problems

SL99

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Re: My Odd Bod status has become some what officia
« Reply #8 on: January 26, 2003, 06:51:11 PM »
Ouch, sorry to hear you're not too good Wriggley.  :( Hope you're soon on the mend.

As for the docs thinking you're a whinger, I ca identify with that one, it took be way to long to get my specialists and GP to admit that something was wrong and finally investigate it - in fcat things ahd to get to a very nasty stage before that happened. Don't give up though mate, keep hassling them and make them take you seriously - everybody deserves that right at least.

Hang in there Wriggley and good luck. Hope you're soon over your cold and I'll chat to you soon hopefully - just don't send your germs down the phone line!!  ;)

Love......Jo
xx