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Author Topic: FINALLY! Tentative diagnosis!    (Read 9307 times)

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Offline rhea

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FINALLY! Tentative diagnosis!  
« on: November 23, 2002, 04:57:41 AM »
Hi Everyone
Im back from the long trip to see this opthamologist.  My aunt is his secretary and was telling him about all my knee/joint problems.  He started asking her a bunch of questions about me and than wanted to see me as soon as I was down there way.  I saw him today and was he ever nice!  Wish all of my docs were that interested in helping me!  Anyways he is almost absolutely sure I have Marfan's Syndrome.  That's a disease making the connective tissues in the joints and in the organs loose and weak causing a whole score of problems.  My height, long legs/arms, my fingers and their deformaties, scoliosis, hypermobility, and a whole wack of other things about my body all point to this rare disease.  When I told him what my rheumatologist said about my problems having something to do with weak or loose ligaments he said well that is Marfan's!   He said that if I walked into an exam room and the students were asked what was wrong with me, they'd all say Marfan's syndome.  He says Im a clear text book case.  Oh, and some good news, the lenses in my eyes haven't been affected yet!  Well its good/bad news in a way.  Good because I dont' need eye surgery, but not the greatest because this guy can't "officially" diagnose me.  He did write a letter to my rheumy saying that he saw me and he thinks I have this disease.  

So anyways I am thrilled to have a kind of tentative diagnosis.  Mom and I were doing tonnes of research on this and it fits to a T.  Granted, its a hell of a nasty disease to have, and if my rheumy confirms I have it that means seeing more doctors, including a cardiologist and getting regular echocardiograms every 3 months.  I don't much like that, but Im just so happy to get my body figured out!  

The bad news about this syndrome is that there is no cure, or any good way of treating the joint problems.  So I guess living a completely independant life is not a realistic expectation.  But we'll see...  Im going to make an appt at our pain clinic and see what can be done for the knee pain.  And talk about swelling in my bad knee...it carries right down into my foot.  So much so that my shoe barely fits on.  A barrel of monkeys!  :-/

Well I am in a lot of pain still from the car rides, so to bed I go.  I had to knock myself out with gravol just so I could tolerate the ride home, so I apologize for any spelling or grammer errors.  

Bye for now everyone, and thanks for all of your support!  Here's to my KNEEguru family, who have gotten me through so much!

lots of love and (((hugs))) to you guys!

rhea

PS, I got my waist length, 27 inch long hair cut to chin length today!  It was too hard to look after in this condition.  I donated all of that hair to wigs for kids, a program that makes and gives wigs to children with cancer.  My aunt (my hair stylist) said it will  make at least 2 if not 3 wigs.        
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 Rich_NYC

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Re: FINALLY! Tentative diagnosis!  
« Reply #1 on: November 23, 2002, 06:17:18 AM »
Hi Rhea
Congratulations on the tentative diagnosis.  After all this time you deserve to start getting some answers ;)
Too bad it has to be Marfan's, even so, knowing what may be wrong should help you get proper treatment.  You have come a long way and deserve to start seeing some real progress.  Good luck and hang in there you are a real inspiration to us  ;D ;D

Rich
scope to repair 2 meniscal tears (didn't help the pain]; post-patellar osteoarthritis

Offline tazmanian_devil

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Re: FINALLY! Tentative diagnosis!  
« Reply #2 on: November 23, 2002, 06:21:56 AM »
Rhea, It's great to hear you feeling upbeat again. That was a nice thing you did with your hair. Marfan's sounds really scary, can you show us a good link to learn more?Here is a virtual hug (((rhea))) and virtual M and M's (I forget what they're called in Canada- smarties??) ...................................................................... Theresa.
L ACL Recon. L lat. meniscus tear 1991, R Dislocated 1996, R ACL partial tear, MCL tear 08/01, R Chondroplasty 2/14/02, R Lateral Release-Medial Reefing-Chondroplasty 12/3/02.

Offline rhea

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Re: FINALLY! Tentative diagnosis!  
« Reply #3 on: November 23, 2002, 06:28:51 AM »
Hi Theresa and Rich,
Thanks for the congrats.  Im still happy to be working towards a diagnosis, although Im sure once this sinks in I'll have a few down days, but once I adjust to it I think I'll be alright.  Having a name does wonders because now I know what type of battle I am fighting.

Theresa, here is a good page explaining Marfan's syndrome:

http://www.io.com/~cortese/marfan/

Thanks again guys for your encouragement and nice compliments.  It really helps me get through the bad days, and celebrate the good days.

(((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...

Helen_uk

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Re: FINALLY! Tentative diagnosis!  
« Reply #4 on: November 23, 2002, 01:11:11 PM »
hi rhea post us  apicky of your new hair cut I am sure it will suit such a pretty girl.
I am glad you are getting some answers.
I too hope to get a proper diagnosis this week but when I asked him before he laughed and said Helens disorder as he has never come across this in such a complicated form.
Hang in there be brave and I am thinking about you
H xxx ;)

Iona_-Uk

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Re: FINALLY! Tentative diagnosis!  
« Reply #5 on: November 23, 2002, 02:01:26 PM »
Hey Rhea

It's great news you've got a diagnosis. One of my friends whom I went to school with had Marfans and she's done loads of charity work. Se coped extremly well, I think a lot of it was done to good treatment.

Best of luck in getting there Rhea, you deserve it.

Iona x

Offline Netty

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Re: FINALLY! Tentative diagnosis!  
« Reply #6 on: November 23, 2002, 05:15:27 PM »
Can you imagine it, all those visits to OS's and and opthamologist tell you what you have. Unbelievable.
At least with the diagnosis you can begin to understand what your up against but I do feel sorry that you have to go through it at all. Is Marfans a hereditary thing?
Having your hair cut signals a new start in life and I'm sure your going to make a few sick kids feel great with your lost locks. I bet they look terrific. Take Care.
Broke the cruciate and damaged the medial and lateral ligs playing softball.Hammy ACl recon Feb 2000(failed).Hammy ACL recon Aug 01(failed).Medial repair and Lateral loop Dec 01(failed).Still unstable

Offline Tizzy953

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Re: FINALLY! Tentative diagnosis!  
« Reply #7 on: November 23, 2002, 11:14:47 PM »
Rhea,
This is so awesome that you finally have a good answer.  I really hope the rest of the docs see it the same way.  When is your other rheumy appointment?

I would love to see your new haircut.  I have had short hair since 3rd grade.  I am now 25.  It is so much easier to do.  It will take a little getting used to.  The first time you wear something without sleeves, and you are so used to it touching your shoulders and it isn't there.  It feels really wierd.

It is about time things started going your way.  You so deserve it.  Stay positive.

Kenzie
11/93-R ankle recon; 10/94-L ankle recon, 2/96-R shoulder stabilization+3 screws, 2/97-dislocated jaw, 11/99- LR L knee, 5/02-diagonstic scope L knee, 1/14/03- TTT+LR L knee, 9/9/03-L knee hardware removal, cartilage cleanup

Offline rhea

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Re: FINALLY! Tentative diagnosis!  
« Reply #8 on: November 23, 2002, 11:31:50 PM »
Thanks Helen, Iona, Netty and Kenzie for your congrats too!  I have an appt with another rheumy dec 13th, but I REALLY DO NOT want to see another doctor, so I am putting my foot down with my parents.  I figure my current rheumy is already figuring things out, and with the input of this opthamologist I should hopefully get an *official* diagnosis soon.  So I am going to phone the rheumy I am with now, find out if she knows that my mri is in feb (she told me I'd defin. have it before christmas)  and if she still wants it, (if not than I'll get in to see her asap) and get her to refer me to the pain clinic here.  I was considering seeing another OS with a shorter waiting list for a scope on my left knee but I decided not to with this new diagnosis.  If I do have Marfan's, that really complicates everything, so I think I should stick with the doctor I have now who I know is the best and who will know how to treat my knee prob with this new diagnosis.  In the mean time I guess its homeschooling and crutching.    

LoL, I'll post a pic of me and my new hairstyle for everyone.  :)  I look a lot different, and a lot older.  Amazing what a new hair style can do LoL.

Thanks everyone.  You guys and gals mean so much to me.   It means the world to me to talk to you people because you understand!

(((hugs)))

Hope everyone is doing okay and being careful on crutches with the snow.

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 Heather M.

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Re: FINALLY! Tentative diagnosis!  
« Reply #9 on: November 24, 2002, 12:47:20 AM »
Rhea,

While I'm very sorry about the diagnosis of Marfan's Syndrome, I'm so glad that you can finally name your devil and begin to fight it!  And no one can tell you it's all in your head, it's related to growth spurts, it's hormones, it's overuse....all that crap you heard for years.

Just think about it this way:  now you can take all the energy you've poured into fighting the medical system and getting your diagnosis into finding a treatment!  I think you will probably be able to move mountains if you put your mind to it....

Best of luck and keep us posted.

Heather
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
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Offline Shazinoz

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Re: FINALLY! Tentative diagnosis!  
« Reply #10 on: November 24, 2002, 01:07:29 AM »
HEy Rhea,
Glad to hear you finally have a tentative diagnosis even if it is for Marfan's. Marfan's, EDS and HMS are all related.
Here is a bulletin Board for all Hypermobility problems including Marfans, in case you wish to post to others with Marfans.
http://www.marge.com/hypermobility/
and here is another
http://hypermobility.community.everyone.net/community/scripts/directory.pl
Hope these help. The echocardiograms are no big deal I have to have them about every years or so. I can also put you in touch with other groups for teens and sufferes of connective tissue disorders such as Marfans.
Just lete me know if you so wish.
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 Sheri

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Re: FINALLY! Tentative diagnosis!  
« Reply #11 on: November 24, 2002, 01:43:16 AM »
It is good to know what you have finally.  Two of my husband's brothers and a niece have/has Marfan's.  (One brother is deceased, though.)  It is a very complicated disease and does involve keeping up with all your doctor's visits and medications, but the good news is that it is manageable.  Just keep up your health maintenance and do what your doctor's tell you and you can live a relatively normal life.  Take especially good care of your heart, as this is affected in the same way as the joints.  

I hope you are on the way to recovery now and will feel better soon.  Also search the internet for support groups for Marfan's.  They do exist, and it might help to be able to talk to others who have it.  I know that my family (in-law) has participated in some research study of the disease, but couldn't tell you exactly how.  It might be that their health is just being (or has been) studied by a group following the disease.  

Go, ahead and see your doctor's.  The quicker they get a handle on the situation, the sooner you will feel better.  

Sheri
Sheri
RLR and LLR in 2000, grade IV chrondromalacia, right Fulkerson TTT on 10/07/02, left Fulkerson TTT on 01/06/03.

Offline wriggley

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Re: FINALLY! Tentative diagnosis!  
« Reply #12 on: November 25, 2002, 03:32:49 PM »
hi rhea and folks,

i am so glad to hear you finally got a straight answer.  At least now you know whats beentorturing you for years.  One of my v v v good friends has marfans and he's 6'10".  I call him a beanpole and calls me a smurf!  There is a photo of us in the bar with him balancing his pint on the top of my head (ha bloody ha;) ) He thought this was the funniest thing ever as did my fiance who took the photo.  Out of interest how tall are you rhea?  

Anyway i'll stop babbling, i'm just really glad your finally getting somewhere! ;D ;D ;D

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

Offline Janet

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Re: FINALLY! Tentative diagnosis!  
« Reply #13 on: November 25, 2002, 03:45:49 PM »
Dear Rhea:

It seems I've been following your saga to get an answer to all of your problems ever since I found this board almost two years ago. How great for you that you finally have an answer. It may not be one you were looking for, but at least now they will know what to treat and how to treat it. It must be such a relief! Keep us posted on what your rheumy says and what they do for you. Congratulations on finally having an answer!

Janet
Torn quad tendon repair & VMO advancement 4/99, MUA with LOA 10/99, Patella baja and arthrofibrosis, LR & medial release & LOA 5/01, LOA & chondroplasty 6/03,TKR on 11/06, MUA 12/06. From perfect knees to a TKR in 7 years, all from a fall on a wet floor...and early undiagnosed scar tissue.

Offline Netty

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Re: FINALLY! Tentative diagnosis!  
« Reply #14 on: November 25, 2002, 06:18:11 PM »
Hi Rhea,
I think everyone is interested in hearing more about whats happening with you. Please let us know soon whats going on
Broke the cruciate and damaged the medial and lateral ligs playing softball.Hammy ACl recon Feb 2000(failed).Hammy ACL recon Aug 01(failed).Medial repair and Lateral loop Dec 01(failed).Still unstable