Wendy the BewilderedPosted by wendyn on 12/03/03 at 20:56 (139297)
For those of you familiar with my history...
Went to the orthepedic surgeon today who did my bunion surgery 12 years ago.
She took new xrays of my feet (I went to her about the bunions that have come back).
Long story short....my feet look almost normal on the xray - there is very little arthritis. Yet, I have large bumps on both my big toes and my baby toe.
She is concerned because the lumps are actually soft tissue (not bunions). Added to the recurruing lumps on my shin and RSD type symptoms...she is very concerned about a possible systemic cause.
I have been checked several times for rheumatoid arthritis and lupus (when I was 16, 21, and 30) - nothing has ever turned up.
She thinks my past diagnosis of TTS and RSD may both be wrong - and that there could be something systemic that is causing all of these symptoms. Perhaps it is something that has been manifesting itself over the years - and may now show up on tests.
She is referring me to a rheumatologist who will hopefully help sort this out. (I did see a rheumatologist at 21, who did not know what was happening to me)
And the saga continues.......
Re: Wendy the BewilderedPauline on 12/03/03 at 21:24 (139299)
How disappointed and frustrated you must feel. I hear you. I hope that your new rheumatologist will be able to get to the bottom of this. Keep looking for the answer and never give up.
I'd certainly talk to anyone that would listen. The more people that you contact the closer you may get to a solution. It just takes one person
who knows someone else with a similar condition or has seen it to make that connection for you.
You never know who that person will be, maybe a doctor or maybe just a friend of a friend who has the same condition, but someone out there has the answers for you.
Popping you on the prayer list too.
Re: Wendy the BewilderedSuzanne D. on 12/03/03 at 21:25 (139300)
Wendy, I was just thinking of you earlier today, wondering how you were. I'm sorry for the continued frustration and 'not knowing'. I'll keep you in my thoughts and prayers, too. I do hope you can find some answers.
Re: Wendy the BewilderedPauline on 12/03/03 at 21:43 (139304)
Just had a thought which might be off the wall, but you might consider shooting a letter off to this national organization for rare diseases. conditions.
Possible contact with this group describing your condition may ring a bell or offer up ideas and perhaps other contacts for you. In addition, you could also find out who is heading the connective disease research for The National Health Organization and run it by them.
Just some ideas that ran through my mind. Not everyone would do this, but I'd take a chance to see if anyone there could come up with some suggestions, or referrals.
I look at it is postage and a form letter that could be mailed to the various agencies.
Not for everyone, just a quick thought.
Re: Wendy the Bewilderednancy s. on 12/03/03 at 21:44 (139306)
wendy, do you still see the doc who gave you the TTS and RSD diagnoses? (am wondering if it would be worth getting this person's thoughts on your current symptoms.) also, do you have a primary care doc who has noticed any other symptoms or test results that would lead to your referral to a rheumatologist?
i've been wondering about you too lately. how are your usual foot symptoms these days, aside from the bunions -- any better or worse?
i know a referral to a rheumatologist for a possible systemic problem can be scary. i hope that the tests this doc will do come out negative, and that the problem turns out to be just another symptom of your very fluky feet.
good luck and keep us posted, please.
Re: Wendy the BewilderedNecee on 12/03/03 at 23:42 (139308)
I certainly understand how frustrating it can be not knowing or understanding whats going on.
I hope that you find a Dr. who can find some answers for you, and whom you can trust to do the right thing.
I'll be praying for you Wendy.
Re: Wendy the BewilderedDorothy on 12/04/03 at 00:03 (139310)
Does she offer any ideas as to what the possibilities might be? Will you be able to see the rheumatologist fairly soon or will there be a wait for you to see that doctor? Are these bumps painful? Like others, I hope that you will get answers AND peace of mind from a completely satisfying explanation that says 'they're nothing to worry about!' Keep us posted and know that we keep you in our good thoughts.
Re: Wendy the Bewilderedwendyn on 12/04/03 at 06:36 (139321)
Dorothy - she seems to think it is some type of auto-immune problem. Yes - the bumps hurt, and I must say I'm very surprised that they are actually soft tissue (the ones on my big toe are rock hard).
Hopefully there won't be too much of a wait - but I haven't got a date yet (they were writing the referral letter)
Re: Wendy the Bewilderedwendyn on 12/04/03 at 06:36 (139322)
Re: Wendy the Bewilderedwendyn on 12/04/03 at 06:40 (139323)
Nancy, when I first described my symptoms to the doctor yesterday (the red, hot, puffy feet) - she agreed that it certainly sounds like RSD. She also agreed that I have TTS type symptoms.
What concerns her is that neither of these have been proven by tests. This, combined with weird soft tissue swelling - has her thinking that perhaps they are all symptoms of a different under ying problem.
My family doctor (and every other doctor I've ever seen) - has always asked about possible systemic causes. But - the fact that this has been ruled out 3 times already leaves them to find some other cause.
My feet are no better or worse - I have been too busy to care about them. (This is not such a bad thing)
I am REALLY REALLY looking forward to two weeks off at Christmas!
Re: Wendy the Bewilderedwendyn on 12/04/03 at 06:40 (139324)
Re: Wendy the Bewilderedwendyn on 12/04/03 at 06:41 (139325)
Thanks Pauline, I'll wait and hear what the rheumatologist says (she's apparently a very nice doctor). But I may certainly follow up on your suggestion on a letter to the rare diseases place.
Re: Wendy the BewilderedRick R on 12/04/03 at 06:43 (139326)
This has got to be frustrating as all get out. Look at the bright side....oh yea, perhaps this is the beginning of taking a new path to the right cause of all of this. My sister just had some magic lumps removed from her arm, at least one of which was pressing on her nerve causing symptoms similar to carpal tunnel syndrome. I wonder. Keep the faith!
Re: Wendy the BewilderedAly on 12/04/03 at 08:31 (139330)
Wow, how frustrating Wendy!
Good luck - I hope they can get to the bottom of this weird thing! Keep us posted...
Re: Wendy the Bewilderedmarie on 12/04/03 at 11:18 (139334)
I sure hope you're able to get this figured out. Please keeps us informed.
Re: Wendy the Bewilderednancy s. on 12/04/03 at 11:33 (139337)
that's true, wendy. sometimes it isn't such a bad thing to be too busy to notice hurting feet. i remember beverly, from a few years ago, quoting a book that recommended doing the thing you love most as often as possible -- the thing that makes you totally lose track of time.
two weeks off at christmas! are you going to do something great? of course, considering your schedule this year, 'something great' for you might mean lying on the couch and letting (or making) everyone wait on you and kiss your feet.
Re: Wendy the BewilderedCarole C in NOLA on 12/04/03 at 12:21 (139340)
Wendy, this news and uncertainty must be pretty unnerving! I hope the rheumatologist can find out what's going on and help you.
Re: Wendy the BewilderedKathy G on 12/05/03 at 13:04 (139409)
Have only a minute and didn't read any of the other posts so maybe someone already suggested this or you've already thought of it. Make sure you have your records from the doctor(s) who treated you for the TTS and RSD forwarded to the Rheumatologist. Also, if you can get copies of any x-rays and bring them, that would help. Especially the most recent ones because why duplicate them? You don't want to glow in the dark!
I hope you get an appointment quickly. It is very disheartening to be told that you have something that deals with the immune system going on but they don't know what. I speak from personal experience.
Don't worry though, this was just one doctor's opinion. Hopefully, when they pool their resources, they'll come up with some answer.
Gotta' move. Was just quickly signing on. Take care of yourself!
Re: Chocolatwendyn on 12/07/03 at 09:50 (139527)
Thanks again to everyone...
Marie - I think you are the one who mentioned Johnny Depp was People's sexiest man of the year...I did pick up a copy (it was most enjoyable).
I've never seen Chocolat - I rented it last night and watched it (a girlfriend of mine insisted that I MUST see it).
Have you ever seen it?