(((((angela)))))

No real advice but I did want you to know that we're here to help and
sometimes to just listen,

Vickie B>

Angela,

I'm so sorry I don't have any answers for you.  I wanted you to know I
read your post and know that you are upset with the news.  Can you do
research on the web about your different options?

Maybe someone will be along soon that can give you more direct answers
to your questions.  Glad you stopped by.

debbie m.

Angela:
I was kind of at the same place about 15 yrs. ago.  I finally ended up
wearing AirCast braces for about 4 years and my ankles self-fused and I
really do quite well.  Remicade helped the most (plus 2 total knee
replacements).  Don't give up--you can have good days again.  Jan O'

Regarding fusion, I've had that hanging over my head for some time now,
too. I've managed with one crutch for a long time but now I use two and
sometimes a power wheelchair, as I also have multiple joints involved. A
synovectomy can only be done if the ankle has a physical anomoly that
this procedure can work on. I take it that he didn't see an indication
that this would be a viable procedure right now, but perhaps you can
bring it up at your next appointment? He did say that fusion would be in
the future, not immediate, so he may already be thinking of alternative
options (perhaps including synovectomy).

Regards,

Ari

Hi Angela,

I'm late coming in on this because, in all honesty, your original post was
quite difficult reading for me without any paragraph breaks.  I waited until
I'd learned more from the replies AND I got a day with less of a sinus
headache to read it (thank goodness it *finally* rained last night and washed
out some of the pollen!)

Several points:
1) I was also diagnosed in my late 20s, so I know how that feels - also have
hypermobility and have had a lifetime of sprained ankles, thankfuly slowed by
a wise orthopod's prescibed PT.

2) ankle synovectomies CAN be done, though success varies.  We even know
someone who had it done and later had a crescent moon tatooed over her
crescent- shaped scar.  So if the problem is still at just the inflammation
level, it might help.

3)  My dad had his ankle fused.  Though he had RA, his ankle degeneration was
the result of traumatic arthritis, resulting from a poorly healed, tiny bone
in the ankle that broke in a bicycle accident.  His ankle was bone on bone
and the bone was wearing away by the time he decided to do it.  As awful as
it sounds, you DO have a some flexibility in the foot that helps you
compensate for the fused ankle.  Daddy was definitely able to walk much
better after his fusion - in fact it drove him to get surgeries on some of
his RA damaged joints so he could walk even better once the ankle pain was
gone!

However, if you still have cartilege in you ankle, you shouldn't need a
fusion yet and it is time for the inflammation to be treated agressively to
avoid such a future.  That is why you got the cortisone injection of course.  
Synovectomy may be another option, also a medication change to drive down
your inflammation overall.  You need to see your RD about that and make sure
he has the records from your ankle specialist.

4) Modern medicine and all our modern diagnostic tricks often lead us to
believe that doctors should be able to tell everything about our bodies.  
Unfortunately, it's not true.  Any halfway decent doctor will catch a disease
that presents in the classic way.  A presentation that is not classic can
confound even the best doctors.

Many of us here have or have had arthritis that does not present in classic
ways.  One person even had multiple joint surgeries and replacements before
she finally got an RA diagnosis.  I personally don't show the classic signs
of inflammation in my bloodwork most of the time, even when my RDs can see
that my joints are inflammmed.  All of this is to say you may not have been
mistreated all these years - it IS possible that your ankle has been
presenting in ways that were confusing and either reached the point of being
more apparent or you found yourself a superb diagnostician in the ankle
specialist.  Frankly, the judgment of your other doctors should be based on
their overall treatment of you AND how they respond to the diagnostic
information passed on to them by the ankle guy you just saw.  

I know how upsetting and frustrating it is to see all of this happening to
your body at such a young age.  I, like some others here, had an arthritis
ravaged parent to look at as my future picture when I was diagnosed 21 years
ago.  Luckily, modern medicines came along before I had that much damage and
we've been able to hold off a lot a permanent damage.  But I also had to
learn to live with the limitations dictated by pain and fatigue.  And I was
blessed by meeting and marrying a man who helps with all of that and cheers
me on.  

Hang in there, you are doing the right thing in educating yourself to take
control of your treatment and a good life is still possible, though perhaps
not the one you envisioned a couple of years ago.