Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
As you all know I am med resistant to everything i have tried. I am now on Cimzia I have had two doses of it so far so too soon to tell with this one. But this is the end of the road for me I can't do IV infusions I have looked into the assistance and its not enough help. My ankles lately have felt like they are spasming or contracting or something it. But its ths intense pain that lasts for a few seconds up to a minute and during this time I can't move my foot I can't walk until this subsides this happens all day long and even when I am sleeping.
I am getting to the point that I can't even walk for more than 10 to 15 minutes before the ankle become so intense that I have to either stop what i am doing or get one of those electric wheel chairs. Since this has happened I can't get up and move like what I use to and I have gain ten pounds in the past two months which at this point should be the least of my problems. But here is the problem everytime I bring up my ankle problems the rhemy never seems to listen or care.
He does a 28 joint count everytime I go and all that covers is the mid nuckles and the joints in the hands and the wrists, the shoulders. elbows, and my knees. When I complain about my ankles he always says that its not part of the joint count and leaves it at that. One time during my moms appointment he did have me stand up and told me that my ankles were collasping and to go to a foot doctor. Well I went to my foot doctor and the only thing he basically said was that the damage is already done nothing they can do.
In the meantime no one has taken any x-rays or MRIs. So how can they assume there is damage without doing those? I am actally starting to get scared that I won't be able to walk much longer if this happens and I am only 25 thats is scary to think of. I knew my life would change with this diease but I didn't think it would happen in 5 years and I didn't think that I wouldn't be able to walk one day.
I am not sure what I am asking here or if this is one of my famous vents that I need to get out. I guess it is just a vent but if anyone has any thoughts, ideas, or advice that would be great. Except the only thing is i can't really get a second opinion because I am already driving two hours away to the one I am seeing now and I always have to find someone to take me because I can't drive that far by myself with my hands so switching to someone else right now is not really an option sorry for typing so much thank you if you have read this far down.
I am getting to the point that I can't even walk for more than 10 to 15 minutes before the ankle become so intense that I have to either stop what i am doing or get one of those electric wheel chairs. Since this has happened I can't get up and move like what I use to and I have gain ten pounds in the past two months which at this point should be the least of my problems. But here is the problem everytime I bring up my ankle problems the rhemy never seems to listen or care.
He does a 28 joint count everytime I go and all that covers is the mid nuckles and the joints in the hands and the wrists, the shoulders. elbows, and my knees. When I complain about my ankles he always says that its not part of the joint count and leaves it at that. One time during my moms appointment he did have me stand up and told me that my ankles were collasping and to go to a foot doctor. Well I went to my foot doctor and the only thing he basically said was that the damage is already done nothing they can do.
In the meantime no one has taken any x-rays or MRIs. So how can they assume there is damage without doing those? I am actally starting to get scared that I won't be able to walk much longer if this happens and I am only 25 thats is scary to think of. I knew my life would change with this diease but I didn't think it would happen in 5 years and I didn't think that I wouldn't be able to walk one day.
I am not sure what I am asking here or if this is one of my famous vents that I need to get out. I guess it is just a vent but if anyone has any thoughts, ideas, or advice that would be great. Except the only thing is i can't really get a second opinion because I am already driving two hours away to the one I am seeing now and I always have to find someone to take me because I can't drive that far by myself with my hands so switching to someone else right now is not really an option sorry for typing so much thank you if you have read this far down.
I recommend seeing a bone and joint specialist.
They are the ones that deal with joint and hip and ankle replacements.
Maybe talk to your GP about it and ask for a referall. Some of them don't need a referall and sometimes your insurance will let you see one with out a referall.
It's worth a try :) Get persistant with who ever you talk to and don't shut up until your satisfied.
Hell by some crutches and limp into your rheumy if that is what it takes to get his/her attention to your ankles.
Wishing you some relief soon,
Missy
Texaschic is right, look for an orthopedic doc. and keep after your rheumy and be demanding if it's all you have.
when you are talking about losing the ability to walk, you have to find a working treatment.
Throwing brainstorm ideas your way:
Take a bus to appt., stay overnight at cheap hotel, (preferrably one with a pool)
Tell friends, family that for christmas, birthday gifts, you want committments for transportation or bus tickets or what you think will work for your situation.
My Rheumy does count my ankle inflammation and does take it seriously.
Just because he hangs a sign and says he has a liscense doesn't make him the right doctor for you.
You have to advocate for yourself. Keep us posted. Hugs