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Author Topic: Finally crutching towards a diagnosis  (Read 5897 times)

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Offline rhea

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Finally crutching towards a diagnosis
« on: January 21, 2003, 11:15:53 PM »
Hi Everyone,
I had my appointment with the rheumatologist yesterday.  The drive down was HORRID.  We got caught in a terrible white out snow storm and there was two very bad multi car accidents just in front of us that resulted in us sitting in the car for 1.5 hours more on top of the 5 hours we had already spent driving there.  Fortunately we made it to my appointment just in time.  My rheumy was in very good spirits and spent lots of time with mom and I.  She went over all of the lab tests and x-rays and said that she thought I had either Marfan's Syndrome, Ehlers Danlos syndrome, or a cross between the two.  She re examined me to make sure she didn't miss anything and said I am very hypermobile.  I told her about some of these hypermobile tricks I had learned (thank you odd bod galler LoL) and showed her the fingertrick.  WAS SHE EVER DELIGHTED!  My gosh, you'd think I was showing her a recipe for a vaccine to prevent terminal illnesses.  So she is still trying to get me into see a geneticist at an all ages genetics clinic located in one of canadas very good children's hospital.  If they are too busy to take me,  I have emailed the canadian eds association for a list of geneticists in ontario that are familiar with eds that my rheumy could refer me too just in case I am not seen at this clinic.  Oh yes, and she also excused me from my exam and for all of next semester at school.  She said it must be a "real bummer" to miss so much school.

All in all it was a pretty good visit.  She said the word "ehlers danlos" so I can "officially" start researching it without being accused of being a hypochondriac.  And my pain clinic specialist can stick is "idiopathic pain" where it counts, because according to my rheumy all of my pain is likely caused by micro traumas I do to my lax, vulnerable joints all day long.  So hmph!  There is a cause for this pain!  

I guess I'll do some more sleeping.  My pain in the car was really terrible as the vibrations and bumps really hurt my spine, hips, and knees.  It was a total of 12 hours straight (with the expection of the 1 hour appt break inbetween) of car riding.  I had to triple my dose of oxycontin, but I had permission to do so from the pain specialist.  Today the much dreaded afteraffects of that trip are very much muted by the oxycontin so that is a blessing!  

Thank you so much for all of your support and shoulders to cry on everyone.  The friendship and group support I have recieved on this board has been phenomenal.  Take care everyone and those of you on crutches be careful in fast food restaurants!  I nearly wiped out three or four times on very wet, slick, tile flooring that those joints love to use.   :P  

bye byes for now

(((hugs)))

rhea
« Last Edit: January 21, 2003, 11:16:15 PM by 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: Finally crutching towards a diagnosis
« Reply #1 on: January 22, 2003, 02:13:35 AM »
Hiya Darl,

Whoa I'm sorry the trip was so horrid for you Rhea, but wow, I am so glad that you are finally making prgress tomwards that all important diagnosis.  :) It really doesn make such a difference to know the reason for your pain and know what you're up against and how to adjust your life to your limitations and find ways to push them without doing any damage!  ;)

Hang in there Darl adn fingers crossed you get to see the geneticist faster than I did thanks to my dithering OS! I guess we're kind of in the same boat now, waiting for our final diagnosis between Marfan/EDS or the combo...sounds like an order form a fast food restuarant!  ::)

Take my fellow Odd Bod and remember that the support. hugsa dn shoulders are here at every step of the way to your disgnosis and beyond. Rest up and recover from that long journey of yours.

With love and a great big hug...Jo
xxx

Offline wriggley

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Re: Finally crutching towards a diagnosis
« Reply #2 on: January 22, 2003, 04:03:12 AM »
hi Rhea

glad to her you sounding so positive!  I cant give to much clinical advice but i do know about benefits and entitlements if you and your folks need some help. Its no hassle as it would break the boredom! lol  Anyway glad to hear your trip was productive even if the journey was horrendous

your buddy

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

Offline daisey

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Re: Finally crutching towards a diagnosis
« Reply #3 on: January 22, 2003, 06:21:26 AM »
Rhea,
    Sorry to hear the trip was no fun at all,  but at least you are one step closer to a diagnosis.  It sounds like you have found a really great rheumy that is willing to help.  Dosen't it give you peace of mind to know that someone actually knows your pain is not all in your head.  I really hope you get the other appointment soon.  It is truley great to hear from you on a positive note.  You have been thru so much.  Keep your head up and good luck.

Daisey
05-2002 Chondroplasty and plicae excision Rt knee
07-2002/11-2002 multiple rounds of physio
11-2002 Open MPFL reconstruction
11-2002/05-2003 Physio
07-2003 Cortisione injection due to return of pain
2005-2007 Cortisone injections bilateral knees
2007 LR LT knee
5/6/2010 TKR scheduled LT Knee

Offline Rich_NYC

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Re: Finally crutching towards a diagnosis
« Reply #4 on: January 22, 2003, 08:30:59 AM »
Hi Rhea,
Sorry the drive was so horrible, but it sounds like it was worth it.  I have think that you must feel relief to  finally see some real progress in getting a diagnosis.  Saw the photo of your finger trick,  pretty cool ;).  Wish I had a way to convince various people that I'm not a hypochondriac or exaggerating my pain :(, ah well.  Good to hear some good news, Take care.
Rich
scope to repair 2 meniscal tears (didn't help the pain]; post-patellar osteoarthritis

Offline Liz_-_UK

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Re: Finally crutching towards a diagnosis
« Reply #5 on: January 22, 2003, 10:36:28 AM »
Hi Rhea!

Wow, almost some answers at last! I'm really pleased it was a good visit - i hope things continue to go well and you get somewhere with the geneticist too.

Take care,

Liz
xxx
03/95 - LR on left knee, 08/95 - LR on right knee, 03/98 - failed TTT left knee. Several scopes. 12/01 TTT and LR on left knee. Great for a while but now more problems.

Offline Sharon

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Re: Finally crutching towards a diagnosis
« Reply #6 on: January 22, 2003, 06:42:10 PM »
Rhea,
I'm sorry the drive was so horrible but at least the visit went really well! It sounds like you have a great rheumy and she's willing to help you in any way she can. It's great to hear that you're one step closer to a diagnosis because you've gone through so much lately. I really hope that you get the appt with the geneticist soon and that goes as well as this one! Hope you're feeling better today and recovering well from the long trip!

(((Hugs)))
Sharon
Left knee:
LR-5/99 & 9/01
Distal realignment and LR 7/02
TTT revision 6/03
screw removal/MUA 10/03
d/x with severe patella baja
7/05 patellar tendon replacement w/piece of quad tendon
4/07 OATS

Offline rhea

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Re: Finally crutching towards a diagnosis
« Reply #7 on: January 22, 2003, 10:21:13 PM »
Thanks Jo, Wriggley, Daisey, Rich, Liz, Sharon, and M for you congrats.  This forum has been the best thing for me.  You people have really helped pull me through thick and thin.  I feel very lucky and extremely fortunate to be able to have access to such a wonderful place.  

Gosh, it just feels so good to know that there is a reason for all of this pain.  It irked me that my pain management guy was so sure (along with my gp) that none of my pain had any pathological cause, when it does!  Its just really nice to have everything I am going through validated.  It's done wonders for my psychological moral just having a name for it all.   I expect that the wait for a geneticist will be at least 6 months.  So maybe in the summer I'll have my health sorted out!  Fingers crossed.

My rheumy is trying to get me into an aqua therapy program run by the arthritis society to help get some of my strength back.  Wow, I bet you I will be the only 17 yr old in a pool with a bunch of 60 yr olds.  Hey, maybe I'll strike it lucky and meet some other crippled hunky guy my age lol.  Oh well, to be truthful these days I prefer the company of older people so I'll probably have a hay day socializing.  My rheumy modified the way I do SLR because it was making my hip clunk and hurt.  Instead of lying down and lifting my leg up, I sit and bring my leg up from a bent 90 degrees to straight at 180degrees and hold for 5 secs.  Thats working a lot better without flaring up any other joints.  Dad just got home with some ankle weights that I am suppose to use to help build them up.    Here's to stronger bodies!

I guess I'll sign off now and rest some more.  Its crazy how an hour of home PT can totally drain a person.  I hope you guys are all nice and cosy warm!  We just reached -32C last night! BRR

Take care

(((big hugs)))

rhea

ps, My OT just emailed me to tell me that she gave these crutch pouches I made her to a lady on crutches who had her leg amputated.  This woman was just delighted with my little crutch pouches and uses them all the time.  It's nice to know that even in this state I can still do some good for other people.  

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 Janet

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Re: Finally crutching towards a diagnosis
« Reply #8 on: January 22, 2003, 10:48:24 PM »
Dear Rhea:

Sorry your trip was so long and uncomfortable, but it sounds like it was worth it in the end. Didn't you just feel like crying in relief when she said there was a cause for your pain? I hope now that you're getting to the heart of the problem, they will find ways to help you live a more active life. Until then, keep on keeping on! You do it so well.

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 Helen

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Re: Finally crutching towards a diagnosis
« Reply #9 on: January 22, 2003, 11:30:11 PM »
Oh Rhea, you sound so up and positive about this Dr. I sincerely hope you get some much needed answers and treatment. It must have been wonderful to have someone believe your pain and be not only sympathetic, but actually interested in discovering the cause and an appropriate treatment.

Ive got everything crossed for you (except my knees, cos that would hurt LOL).

Helen
04/07/02 RL - patella tendon realignment, LR and meniscus trimmed. RSD set up home shortly afterwards....typical.

Offline Heather M.

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Re: Finally crutching towards a diagnosis
« Reply #10 on: January 23, 2003, 12:42:46 AM »
Rhea,

Knowing what's going on and having people believe that your pain is real and beyond your control is very vindicating. When I think of your GP blowing you off all these years... >:( >:( >:(  It must be such a relief.

If you can name your demon, you can fight it as well.  It sounds like you are getting excellent care--finally.

I wish you all the best.  Like you, I'm learning new variations of old exercises like the SLR, and that can add a little variety to your workout.  

Keep up the good work and the good attitude.  You are an inspiration for all of us, taking this new challenge on with determination and grace.

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
http://www.flickr.com/photos/hmaxwell

Offline Liz_-_UK

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Re: Finally crutching towards a diagnosis
« Reply #11 on: January 23, 2003, 12:56:36 PM »
Hey Rhea!

I had aqua therapy last year and it was great! True, i had to share the pool with some old ladies but they were lovely and we all encouraged each other.

It really helped getting muscle strength back - i was able to walk normally and do stairs and everything!

I hope you get it sorted soon.

Liz
xxx
03/95 - LR on left knee, 08/95 - LR on right knee, 03/98 - failed TTT left knee. Several scopes. 12/01 TTT and LR on left knee. Great for a while but now more problems.

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Re: Finally crutching towards a diagnosis
« Reply #12 on: January 23, 2003, 03:45:19 PM »
Hi rhea I am so glad that you are finally getting somewhere.
I was so happy to read that you have finally got someone on your side and hopefully they can help you to get on top of the pain.
Those crutch pouches sound interesting can you let me know about them I struggle to carry things.
Take love H xxx ;)

Offline muskypike

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Re: Finally crutching towards a diagnosis
« Reply #13 on: January 23, 2003, 03:45:20 PM »
Hi Rhea:

What a relief to finally have some answers.  I know what it is like to keep hitting road blocks, you begin to question yourself.  I hope that they can come up with a plan for you.  I'm sure you feel like a huge weight has been lifted off your shoulders.  You are so fortunate to have such caring parents.  I hope you let them know how much it means to you that they are soooooo supportive of you.

I'm sorry the car ride was so awful, thank god you made it thru that horrible snow storm.  I'm sure you were wondering if you were gonna make it to your appt.  I hope you are feeling better today, although with such cold cold weather, I bet its hard to move around.  

Rhea you are such a positive influence to all of us here.  You are so young to be dealing with all this pain, but your spirits are always up and you offer such kind soft spoken words to everyone, when you are in such great pain.  I hope and pray that you will get better and your doc's can treat your pain.

Stay warm up there in Canada.  In chicago it is about -20c.

Best wishes to you Rhea,

Ellen
GOLDWIATH1980. LR1992. MENISCUS TEAR 1992 1999 2003. SYNVISC INJ 2001, FULKERSON 2002 W/ PATELLA CHONDROPLSTY SYNoVCTMY & LR SCAR TISSUE REMOVAL4/03 STAPH INF4/03 BONE INFECTION 4/03 TKR 3/04 meniscus tear 7/04 LOA 9/04 RSD 9/04 LOA 1/05, and LOA in May, told by OS will need loa every 3 mos. ENUFF!!

Offline rhea

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Re: Finally crutching towards a diagnosis
« Reply #14 on: January 23, 2003, 09:06:03 PM »
Thank you Heather M., Helen, Janet, Liz, Helen UK, and Ellen for your words and sweet compliments.  I am extremely lucky to have wonderful parents.  I think they feel guilty not believing what I was saying before and listening to the doctors instead of me, so now I think they are trying to make up for it.  They have been very supportive through out this.  Even my Dad has been so understanding when I had to drop my school courses.  

I woke up today feeling pretty crappy.  My spine is especially grouchy today.  So I did something I am not suppose to do, and had a bath instead of a shower for the first time in over four months.  Gosh it felt so good just to soak in the tub for a change.  Its funny how some things some people take for granted can be such a luxury to others.  Thanks to this oxycontin I can somewhat enjoy the little pleasures of life.  

Thank you for your unrelenting support!  My kneeguru pals have been the life jacket that keeps me afloat in this rough sea of health problems and doctor appointments.

Big (((hugs)))  :-*

rhea  

ps, Helen UK I've IM you about the crutch pouches!
« Last Edit: January 23, 2003, 09:07:37 PM by 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: Finally crutching towards a diagnosis
« Reply #15 on: January 24, 2003, 02:02:24 AM »
Rhea,
I would be lost without my Baths (I use them as a form of Pain relief). I sometimes have troubles getting in or getting out but it is worth it.
I am glad that the oxycontin is helping now. And rug up and stay warm inside.
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 +++















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