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Author Topic: Frustrations of connective tissue disorder patient  (Read 8802 times)

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SL99

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Frustrations of connective tissue disorder patient
« on: December 02, 2002, 04:50:39 PM »
Hi,

I'm new to this board so hope you wont mind me barging in and blathering away! I'm really glad I found it though as it's great to hear other people's stories and know that you're not actually alone.  :)

I'm afraid mine is a rather long story, but I shall try to be as brief as possible. I've had problems with all my joints, but particularly my knees for as long as I can remember - coupled with other odd symptoms. Unfortunately, over the past 10-15 years because I didn't fit cosily into the text books I have encountered doctors who have misdiagnosed me with and "treated" me for everything from ME to cattle diseases! And yes I did get called "Mad Cow" for a while! Eventually though I was branded as a hypochondriac by certain medical "professionals" and I'm now in the process of tidying up the fall out from this situation.  >:(

Although I've always had terrible joint pain and what I now realise were subluxations of joints, my condition has deteriorated dramatically over the past three years since I badly dislocated my left knee. Physio and a fourth soft tissue surgery failed to rectify the problems and I am now unable to walk without crutches. My other joints have followed the same dislocation route and I'm now adept at popping shoulders, ankles, jaw, fingers etc back into position.

Fortunately, after years of pain, abuse from doctors and frustrations I've recently found a geneticist who has listened to my situation and taken me seriously. And as such has pinpointed my problems to a rare connective tissue disorder. Although it is immensely scary to hear such a diagnosis and accept the frightening consequences of the illness it's also a huge relief to finally know what's wrong and have someone believe that it's real.

I've also found out that the connective tissue situation is being worsened in my knees(esepcially the left) due to a malformation of the femur and knee joint and I require very complex surgery to correct it....unfortunately my current OS has in the past year retracted on her plan to find a surgeon capable of doing the operation and now feels it would not be beneficial. To the extent of even denying there is anything wrong with my leg now and suggesting that I just need to work harder at physio! Even though I appreciate the added risk of surgery from my condition, I still cannot fully understand her decision as I can't simply go on the way I am as PT isn't working. Heaven knows I don't want to have to go through the kind of gruesome surgery I need, but I'm prepared to of it offers me a chance of walking again, reducing my pain and having some quality of life and independence again.

I'm now in the process of clearing up the mess made by certain doctors gross misjudgement of me and my health and also going along the track to a second opinion from another OS, so fingers crossed I can finally get somewhere.

I'm so sorry for venting to you guys and thank you for listening. I guess I'm just still a little shell-shocked, frustrated and angry right now. I think sometimes it's just good to get things off your chest especially with people who know the frustration of being ill and in pain.  I hope that your own various hassles aren't too painful for you right now -thank you once again for your time and patience in reading my little rant with the world!

Best wishes,
SL  :)
« Last Edit: February 10, 2004, 01:00:03 PM by admin »

Offline Linds

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Re: Hi, Mind if I Vent!?
« Reply #1 on: December 02, 2002, 05:22:08 PM »
Wow...the medical community can really screw us over sometimes can't they. I have a friend who has a very similar story to yours. I shall see if she will post here..you coudl probably share stories. I hope that they can do something for your pain, no one should live in the pain that you have. It isn't any quality of life. I can't relate to all of your pain, but I have lived with screwy knees for the last 13 years of my 22 years on this earth.  I know of the sort of doctors that you speak of, and all I can say .. is they are human too.  :-/ I hope that you get some help..and feel free to vent anytime...gotta have somewhere like this..where you can vent..and mostly to people that understand what it's like. Take care and we are all in this together.
Linds
1997 Scope RK
2002 LR RK
2002 Scope and hematoma evac RK
2004 LR LK
May 06 Fall from Horse, partial ACL tear and meniscus injury, Tibial plateau injury
2007 Scope, Plica Excision and Debride LK
2009/2010- Possibly Ankylosing Spondylitis?

Offline rhea

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Re: Hi, Mind if I Vent!?
« Reply #2 on: December 02, 2002, 07:39:16 PM »
Hi SL,
Linds got me to read your post, and it looks like we have quite a few things in common!  I have had crappy knees for 6 yrs now...  It took four surgeons before I found a good one who was willing to help, only his waiting list is atrocious.  I'm waiting a year for a simple scope, but hey I guess the best are worth waiting for.  

I too have had problems with my other joints.  I broke 3 bones (left arm, right arm, left wrist) just in simple falls.  I have pain in all of my joints except my neck.  I've found a good rheumy who is now trying to diagnose me.  She, and my opthamologist think I have a connective tissue disorder.  The two things they are debating between are Marfan's Syndrome and Ehlers Danlos Syndrome.  Like you, its a heck of a relief after all of these years to have a *name* for all of these various ailments.  Its like the puzzle is finally being put together, although the overall assembled picture is not a pretty one. For the past month and a 1/2 I've been at school stuck on the couch or in my bed with terrible knee pain thats kept me from school.  Im hoping a visit to the pain clinic will at least make existing less painful.  

Anyways, I completely understand what you are going/gone through.  Its terrible how the medical system puts us through the mill.  Until I found my wonderful OS and good rheumy I felt like it was me against the whole medical community, and each appointment was a bloody battle just to get 1/2 decent care.  

If you want to talk some more let me know and I'll IM you my email address.  I truly hope your next OS is a jewel, and if he/she is not keep seeing new ones until you find a good one.  May I suggest you take a peak at the list of good knee surgeons on the KNEEguru?  Thats where I got the name of my excellent 4th surgeon from.

Lots of (((hugs))) to you, and luck with your next OS appt!

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: Hi, Mind if I Vent!?
« Reply #3 on: December 03, 2002, 01:39:20 AM »
Hi Linds and Rhea,

Thank you so much for your messages they are much appreciated and thank you very much for making me so welcome too. :)

Gee, it certainly seems to be a recurring theme of being put through the mill by docs etc doesn't it? It's such a shame that there's so much battling involved in getting good treatment these days. Oh well, here's hoping we are all on the right road to finding good consultants and finally getting somewhere.

Rhea, I too am having investigations for Marfan or Ehlers Danlos Syndrome right now - waiting for more tests to confirm which one. I'd be very interested in keeping in touch with you and "comparing stories" so to speak! thanks for the offer. :)

Please feel free to PM me and we can swap email addresses, as it'll be great to talk with someone who knows what it's really about as a lot of my friends are caring but rather ignorant or patronising over the situation, which I'm sure is something you'll understand.

Thanks again for your time and for reminding me I'm not alone.  :)

With best wishes and hugs to you both,

SL

Offline Shazinoz

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Re: Hi, Mind if I Vent!?
« Reply #4 on: December 03, 2002, 08:48:03 AM »
HEy SL99,
I too have HMS/EDS (not sure which) so I know how you feel. I have been through the "it's all the it is in your head stuff" and the "what have you done this time stuff" etc etc. I too am a dislocator and subluxator (not sure if they are words :) ). I have joint pains too, I have large and small joint hypermobility along with A LOT of other stuff. Boy between us we need to start a new Hypermobility/ connective tissue thread :), there are others here with hypermobility and connective tissue disorders as well as You, Me and Rhea.
It took my doc's 30 years to get as far ad diagnosisng me with a "hereditary, genetic, connective tissue, collagen, hypermobility disorder" they say it probably isn't EDS as I don't have the stretchy or doughy/velvety skin but that my skin isn't "normal" either. I know that especially with Hypermobilty type (old type 3) the skin stuff doesn't really have to be there much if at all. Most of my family seem to have it to some degree (in hindsight and being diagnosed because of me).
Well welcome anyway and feel free to Im or email me too if you wish.
[email protected]
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: Hi, Mind if I Vent!?
« Reply #5 on: December 03, 2002, 02:02:25 PM »
SL99,
I am a happy (or unhappy) member of the worldwide weird body club. I guess I am the Australian contingent :D ).
I have some more criteria.
* Being told there is nothing wrong with you, you are faking, it or it is all in your head;
* Still having weird symptoms that don;t fit the disorder they fianlly diagnose you with :),

Oh ain't life grand for those of us with "funky" bodies.
My partner calles me his "defecto" wife instead of defacto  :-/ .

Well we weird body persons need to stick together no matter where in the world we are. And we should share all info we find on our conditions with others of the same condition (once a definative diagnosis is made).

My diagnosis so far is a "Genetic, Hereditary, Connective Tissue, Collagen, Hypermobility Disorder (I just say HMS and this is the sort of diagnosis I have as it is A Hypermobility Syndrome. I think it may be HEDS (EDS 3) but I can't get a doctor to look at a further diagnosis.
« Last Edit: December 03, 2002, 02:03:36 PM by Shazinoz »
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: Hi, Mind if I Vent!?
« Reply #6 on: December 03, 2002, 04:14:56 PM »
Haha - a World Weird Body Club, I like it!! Perhaps we could call ourselves the Oddbods?!  :D

It's kind of strange going through life as a freak of nature though isn't it? My old OS used to get me to do "party tricks" for the students or anyone he could find come to think of it and would spend ages wiggling my fingers and knees around for his amusement!

Rather sadly actually, I think I qualify for membership on all the above accounts. I've never done anything by the text books, I've lost count of the doctors and specialists I've seen ( all of which until recently missed the connective tissue disorder!) I've been branded as a hypocondriac by my GP ( it's actually in my notes!! :o) and I'm still not quite fitting into the ideal pigeon hole of either category as I have cross over symptoms from several different conditions.

So do I get in?!  ;D

Best wishes to all,
SL

P.S. Thanks for the welcome Shazzinoz, will drop you an email soon - might take me a while though as my left arm is in plaster after dislocating my thumb three times in 4 days!  ::)
« Last Edit: December 03, 2002, 04:16:59 PM by SL99 »

Offline Shazinoz

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Re: Hi, Mind if I Vent!?
« Reply #7 on: December 04, 2002, 02:42:31 AM »
Oh I know that feeling SL99, I just recently (a couple of weeks ago) got out of plaster for a suspected scaphoid fracture, it wasn't it was a dislocated thumb/wrist and possibly tenosysnovitis to boot, it just kept going out and I couldn't seem to keep the stupid thing in the proper place AHHH). Anyway SL99 Good Luck (it took my doc's 30-31 years to diagnose me and then only because I suggested it to them, after doing research on the net on Hypermobility and seeing the HEDS/HMS stuff and thinking OH DEAR that it me).
My thinb/wrist is finally sort of settling down as long as i take it easy, but keeps doing it's own stupid thing. To make matters worse the doc's wouldn't leave the cast on once they found out no fracture as they recon it will make my RSD worse (IT six having both as the treatments are the exact opposite of each other  :'( ).
I also find that once you have a diagnosis of sorts (this is the down side) the doc's blame EVERYTHING on it, with my knee, the OS I saw said oh don't worry it is PROBABLY just your HMS?HEDS and RSD, just get a good brace and wear it 24/7 maybe for the rest of your life  :o , and that it isn't worth looking at my knee to find out what is wrong with it so just live with it). HE won't even look at it AHHHHHHH ::), just says it isn't worth it (YEAH for who, I can't W A L K, you fool). And when I go to the ER for dislocations (usually only bad ones and if I can't talk anyone else into getting them back in for me, Like my ribs etc, they just tell me you can't dislocate ribs it must be cosotchronditis and send me home with some anti-inflammatories, I keep telling them to take and xray and they will see 100% that YOU CAN). I have to wear a Medic Alert bracelet now (as I have new allergies, pretty bad ones, and it also has RSD and HMS on it I am not allowed to put EDS on it as I can't get a doc to try for a proper diagnosis of HEDS).
Anyway Sorry for the rant :), but this is life.
I have some really great web site and bulletin boards on HMS, EDS and Hypermobility, some of which I have posted down below in the Useful web site section under Hypermobility or something like that.
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: Hi, Mind if I Vent!?
« Reply #8 on: December 05, 2002, 02:09:03 AM »
Hi there,

Sorry I haven't been in touch sooner, had to go to my OS this morning and have spent the rest of the day recovering!  ::)

Sadly because of my connective tissue issues and complications theres not an awful lot my surgeon can do for most of my joint problems, especially my really ddgy left knee. She's sending me to see another knee surgeon to make sure we've explored every option but she's not all that hopeful of finding a suitable situation for stabilising it.  :'(

While I'm still clinging to the hope of there being something they can do, I have to confess to feeling a little shell shocked that my current situation could be as good as it gets. It feels like being beaten around the head with a cricket bat hearing the words "not going to get better" and " nothing I can offer you". Oh well, I guess I can still hope and pray that this new specialist may have an ace up his sleeve...

Shazzinoz, I'm sorry to hear about your thumb/wrist problems - how are they now? Mine is causing a lot of concern for my OS and I now have to stay in plaster until after Christmas because it's so damaged and unstable. Then comes the scary bit...in Feb I'm scheduled to have the middle joint in thumb removed and the bones pinned and fused in order to stop the dislocations. I'm a little freaked out by the whole thing but we feel it's the only option open to me as the joint has become so bad. I was going to say fingers crossed it works, but given my present state I'd better not risk dislocating anything else for good measure! ;)

Sorry, for rambling and feeling sorry for myself tonight but I think I'm still feeling a little stunned and struggling to comprehend it all. Thanks again for listening guys and I promise I'll be in touch with you properly soon.

Take care and hugs to you all,

SL

Offline Linds

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Re: Hi, Mind if I Vent!?
« Reply #9 on: December 05, 2002, 04:44:27 AM »
Hey Jo, sorry to hear that you are going through such a rough patch, I hope that things look better in the morning. Talk to you soon
HUGS and healing
Linds
1997 Scope RK
2002 LR RK
2002 Scope and hematoma evac RK
2004 LR LK
May 06 Fall from Horse, partial ACL tear and meniscus injury, Tibial plateau injury
2007 Scope, Plica Excision and Debride LK
2009/2010- Possibly Ankylosing Spondylitis?

SL99

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Re: Hi, Mind if I Vent!?
« Reply #10 on: December 07, 2002, 02:50:56 AM »
Thanks Linds - much appreciated. Sorry I've been a little AWOL, but on top of feeling lousy after seeing my OS I ha d a "funny" episode with my heart and breathing. Then to cap the week off I finally got copies of the letters between my GP and surgeon in which they accuse me of hypochondria. There really are some very upsetting and insulting comments in them and they left me feeling very, very angry and betrayed.  >:(

My only slight consolation is that they are both flapping around almost pathetically now that they've been proved so wrong and find themselves having to admit they misdiagnosed me, misjudged my situation and were grossly unprofessional. If I wasn't so angry I would find it all quite amusing....

I'm feeling a little more positive about my knee situation today and I'm pinning my hopes on finding a surgeon willing to at least try and stabilise my knee inspite of the connective tissue issues. I mean I'm not prepared to merely accept that it's going to be this way without even trying to get it fixed! I haven't really got a lot to loose and after all I'd rather end up crippled in spite of best efforts to improve as just roll over and accept it now.  :o

I've been told that the femoral osteotomy and knee reconstruction needed for the malformation I have would be too risky because of my condition, so I can only hope that someone out there can offer an alternative. Fingers crossed time again I suppose!  ;)

Hope everyone is okay and that dodgy bits aren't misbehaving too badly! Take care and best wshes to all.

With love,

SL

Offline Linds

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Re: Hi, Mind if I Vent!?
« Reply #11 on: December 07, 2002, 05:05:30 AM »
Hey SL sorry to hear about your crappy docs..but well..they are people too I suppose. glad to hear that you are feeling more positive about your knee..sure could use some of that positivity down this way.
I don' t have much else to say..except hang in there...
Take care and hope to hear from you soon
Linds
1997 Scope RK
2002 LR RK
2002 Scope and hematoma evac RK
2004 LR LK
May 06 Fall from Horse, partial ACL tear and meniscus injury, Tibial plateau injury
2007 Scope, Plica Excision and Debride LK
2009/2010- Possibly Ankylosing Spondylitis?

SL99

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Re: Hi, Mind if I Vent!?
« Reply #12 on: December 14, 2002, 05:06:12 PM »
Hi,

I managed to have a meeting with my doc about the letters and comments and there consequences this week and to be honest it was actully quite therapeutic to see him squirm when faced with issues he could no longer deny or fob me off about. I'm so glad that I did it, and that I held my head high and mantained my control and dignity in doing so too....

My doctor was forced to admit that he and my OS had made gross misjudgements about my health, personality and character and had misdiagnosed me with serious results. And (here's something you don't see everyday!) he even apologised to me for his actions and the affect they had had on my and family!  :o

He's now promised that he will make sure a letter of admission and explaination about the untruths and insults written in the past is placed in every copy of my notes aswell, in order to ensure my future treatment and consultations aren't prejudiced and jeopardised by previous mistakes and misguided opinions.

He is currently prepared to jump through hoops in order to help me too, something which I intend to make good use of....I only find it sad that I had to back people into such uncomfortable positions before I received the treatment and respect I deserved.

SL  :)
« Last Edit: December 14, 2002, 05:08:37 PM by SL99 »

Offline The KNEEguru

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Re: Hi, Mind if I Vent!?
« Reply #13 on: December 15, 2002, 09:14:19 PM »
Hi
I have opened a board for you all.  Herewith also a link:
http://pub96.ezboard.com/fpediatricnetworkfrm16.showMessage?topicID=13.topic

KNEEguru
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KNEEguru

SL99

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Re: Hi, Mind if I Vent!?
« Reply #14 on: December 15, 2002, 10:04:27 PM »
Thank you very much for this Kneeguru - it's most appreciated!  :)

SL