Severe degenerative osteoarthritis.

[bunnies]

My orthopedic Dr. says that I have the worst case he's ever seen in anyone under 60. Except for this one guy, from Cambodia, who had it as a result of infectious TB in his bones. My Dr. treats the un-treatable from around the world, so his experience is uniquely vast. That said, Im sure you can imagine I was shocked to hear that I was the "worst".

Im already at the point where I need a joint replaced. The cartilage is gone, the joint fluid has seeped into my bones and I have numerous cysts, bone spurs, edema, effusions, blah blah blah. Thing is... because Im only 40 (just turned in March) I'm not a candidate for joint replacement. Maybe if it were something common like a knee or a hip they would consider doing the surgery despite my age. But somehow, some way, I managed to get this in my elbow (needs replacing) and my wrist (not that bad yet).

Apparently there is one surgeon at Mass General who could perform a procedure that *might* help. My arm is pretty much stuck at a right angle at this point & I guess they can try to restore some range of motion. But, not having insurance or any money pretty much takes that option off the table. They just arent prepared to treat cases like mine, he says. Even *he* doesnt do that surgery.

So tomorrow I'm trying an injection of hyaluronic acid to see if it might help with the pain. Its not FDA approved for the elbow so he's able to give it to me as a "sample". It'll still cost me several hundred dollars for the appt. You know, Dr.s like that arent cheap. But they were nice enough to allow me to pay $20 a month forever. Although, considering that this OA has also destroyed both my forearm tendons, Im not feeling very hopeful about the injection. Maybe its because the thought of a needle into my joint isnt one that gives me happy thoughts.

Tomorrow I should also learn the results of my rheumetoid test. He thinks I probably have that or lupus or some other such thing as an underlying cause of the OA. sigh. One time, years ago, I woke up with a knuckle the size of a golf ball that was red & painful for no reason. It stayed like that for almost a year but I never saw a Dr. (no isurance). He says thats one of the symptoms.

Do any of you have any experience with this kind of thing? Or any aspect of my situation? I'm feeling kinda like I'm the only one in the world and its a pretty lonely place to be.

Any insight at all would be extremely helpful. Thanks all.

[Warpy]

1. I know what it's like to be an "interesting case" at MGH

with a gaggle of at least 50 med students and newly minted interns staring at you, so I can sympathize there. BTDT. I can relate to the pain, since RA turned out to be one component of my interesting cluster of symptoms.

However, you've got one thing I don't--the fact that only one doc in the US is doing fancy elbow surgery means that other docs are going to have to be trained to do it, and that means that there is a ghost of a chance they'll pick up the tab eventually just for the practice. You might explore things from that angle.

Or you can just wait a year in intractable pain until the ACA is fully implemented and somebody has to insure you and gird your loins for battle with whoever gets stuck with you.

And those 50+ docs and students? Don't worry. They can't pick you out of a crowd afterward. I also worked at MGH and know that for a fact. Once you have clothes on, they'll never be able to recognize you.

[bunnies]

2. :)

I dont even think my primary care doc would recognize me with clothes on. I had no idea how dismissive and unfeeling so many of these Dr.s are. I wonder why they even went into that field in the first place. (($))

I was kinda hoping my ortho wonder-guy would be willing to try the surgery MGH does. He was the first one to do a specific kind of shoulder replacement in this country and is the one of the best elbow surgeons there is. But even he doesnt want to give it a try. What really sucks about that is that my local hospital has given me financial assistance... which means I could have the surgery there are no cost to me. Of course the one guy that does it doesnt have privileges there though. Even when I get help I cant get help.

That was one of the things that blew my mind about him saying "we want to put off the replacement for as long as possible". Yeah? WE? And what the hell am I supposed to do in the meantime? Lemme guess. Suffer. Gee thanks.

Did you ever get a diagnosis? Or any help at all? I feel like all they want to do for me is give me a bunch of narcotics. Did they do the same to you? Why do they make is so difficult?!

[Warpy]

3. I'm swimming in a whole bowl of alphabet soup

but I'm still swimming, not ready to sink just yet.

I've had to inform a few docs that no, I will not be doing dialysis, but that's the worst of it right now. I'm not very close to needing it yet.

[The empressof all]

4. It sucks doesn't it.

I had hip replaced two years ago which offered some relief but both my knees, the other hip, shoulders and back are afflicted. The hardest part for me is not being able to get around to do the things I need to do and becoming dependent on others. I sometimes feel not only trapped in my own home but trapped in my painful body as well.

I have learned to live somewhat with the chronic ache. It eases somewhat in the warmer weather but it is always there and my movement is always curtailed.

I take a plethora of herbal supplements which help a bit Probably a placebo effect

Lots of folks don't understand the depth of the pain of this kind of arthritis and think it can be alleviated by two aleves.

Feel free to PM me....We are in a similar place

PS: I had the injections in my knees. Helped a bit. But not a long lasting impact.