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New here...frustrated with medical process

Mar 01, 2016 5:09 PM

Hi, I'm new here. I have arthritis, but am waiting to get in to see a specialist to get a proper diagnosis (my appointment is set for late July). Ive been in pain for years...20 or so, but just ignoring it as best I can. I've been accepted into the Arthritis Centre (only a 3 month wait for this), where I'm getting physio and help from an OT to creat braces so that I can knit. Three years ago I had my knee fuse and ended up with a knee replacement. The other needs to be done, but I need to lose weight. Right now, I've been diagnosed with elbow arthritis, affecting the ulnar nerve. I just saw the surgeon, 5 months after my initial pain. He said he could move the nerve around and clean up the joint, but he won't. He doesn't think it will do much. I feel as if I would have had a different answer if I were more fit. I feel crushed. I've got pain in various joints and muscles, this elbow pain has put me over the top. I've been off work for five months. My family doctor has been great. I'm on an anti inflammatory medication for joint pain and Gabo for nerve pain, but often the pain in my elbow is intense, shooting down my arm. I thought I saw the light at the end of the tunnel, but the surgeon just turned it off. I just feel like I'm in limbo...Any advise on ways to cope while I wade through the medical proces would be greatly appreciated.

Mar 01, 2016 11:43 PM

Sounds like a bad ortho. Can you get a 2nd opinion? It is so frustrating to hope and then be crushed. I've been in tears after my last 2 appointments 😢 No one else understands how truly miserable it is... I hope you get a better answer

Mar 02, 2016 6:52 AM

Ugg I understand how you feel. I was diagnosed with hypermobile Ehlers Danlos three years ago. I was hoping that having finally gotten a diagnosis the doctors would start believing me when I said something was out of place. Nope now I hear what's Ehlers Danlos? Can you spell that for me? No your shoulder can't be out of place because you wouldn't be able to move your arm. No we're not going to take an x-ray because I know it's not out.

I have a cousin whom just before he got out of the army they moved his ulnar nerve from the outside of his elbow to the inside. The last time I saw him was at his father's funeral, so I wasn't able to ask him how it feels a couple of years out.

Good luck and don't be afraid to vent with us. :-)

Mar 02, 2016 11:47 AM

I do not understand why doctors won't move forward with treatment a lot of times. So it's up to us to pursue a physician who will. I think after a person waits to get in with a doctor and the doctor doesn't treat the person... Then the doctor should pay us the money he/she receives from the insurance company or patient. I bet they would respond differently then!
Late July sound like a life time away. Sorry you have to wait so long dlwc!

Mar 02, 2016 11:57 AM

Absolutely find another doctor as soon as you can! Another surgeon's input is invaluable.
I had a tear in my hip joint. The VA only wanted to do injections whenever they could get me an appt, haha, months later. This was after one of their procedures where they injected dye into the joint for an imaging test left me bedridden! Heck no, you aren't injecting me again!!!!!
Fortunately I also have Medicare, and the surgeon I was referred to saw the xrays and said, "when do you want the surgery?" Nearly 3 years later and I can walk without pain most of the time, just a bit of residual arthritis on cold days. My portion was several thousand because I only had basic Medicare then, but it is worth every penny!!

Mar 02, 2016 2:11 PM

I'm sorry you're having to wait so long to be seen. I have arthritis too, first in my knees, then spine, and now my hips & finger joints. I just finished PT on my hips and knees but it really hasn't helped much. But as I'm beginning to see it, there is an obstacle course we're have to jump through before we can get to the finish line. 🙂💕🙏🌼

Mar 03, 2016 6:48 PM

Hi just joined for eight to ten years was told things like it's the menopause over forty fives tend to get arthritis and just because family members have fibromyalgia it doesn't mean that you have to old doctors returned new ones took over but still took me a long time and many tick boxes and examinations to get fibromyalgia put on my medical notes

As yet the blood test is not available here but hopefully not much longer my current doctor asked what if I had the teat and it was negative I replied I'd be pushing for every single teat then to find out why my body is so ####### painfull most days 💐

Mar 03, 2016 7:46 PM

Thank you. You have no idea how much hearing your stories helps. I really feel most days as if this is my fault, and so my penitence is to silently put up with the pain. I feel like I must be a serious crybaby because otherwise the surgeon would have something he could fix. Luckily my family doctor is behind me. And, now I've found this place....

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