update 12/26

David - sorry to hear that your hips are worse. Hopefully the neurologist can figures something out. With all the radiation you took, you do have to wonder about what kind of nerve damage that left behind.

As always, you're in my thoughts and prayers,
Andrew

Gee I am sorry to read this David. If ortho doc says "not bone problem" and the phys therapy says "not muscular" then you would have to think that the nerves that control movement are being affected some where. Perhaps a nerve(s) being pinched and control of the limbs lost for a moment causing your legs to give way. I sure hope the new guy can pinpoint the cause and start some remedial action.
All the best for the new year,
Bill

Andrew, no doubt that its a continuation and spreading of the nerve damage from the flawed radiation. The part that I have a hard understanding myself, is how this damage still continue to grow and worsen. I was through with the SRT Thanksgiving of 2009, over 4 years ago. You would think that "x" amount was damaged, and that would be that. Plus, my doctor now believes this nerve damage is reaching out and effecting other pre-existing neuro damage in my body, making them worse as well. Or this could the underlying tell-tale signs of something else sinister going on. Really need some answers. At this rate, it may not be safe to even walk at all. I was told about a year ago or so, that if I continue to go down hill like I have been, that I could end up in a wheel chair. I simply didn't believe that to be literal at the time.

Aimzee - thanks, we had a decent Christmas this year, no complaints really. No, none of this is fair, and this has to be one of the more unusual and aggravating of PC journeys. I really have never had a break at any point since this began in August of 2008. Give my best to Ron

Billy, by observation only, it acts like an "electrical" problem, thus nerve. When this happens, its like those signals to those muscles, simply aren't getting the right signal, or perhaps any signal at all.

Sephie, I agree. So does my doctor. We both want a specific cause and diagnosis. Just causing it severe nerve damage makes for a nice generic term, but it doesn't help me as the patient, and doesn't help my treating doctor find better ways to treat me. December 31st cant' come soon enough, as far as I am concerned. Though I realize that with this neuro, will involve a lot of patience, trial and error, testing, and going through a lengthy process of elimination.

David

I am sorry to hear about your hips deteriorating so fast David. It's the last thing you need and I hope the new neurologist finds the cause as soon as possible.

Regards,
An

Hi, David
We all know how difficult this waiting can be, whether seeing a new doc or getting test results. Prayers for a great connection for you and the neuro. And prayers that he finds the cause quickly and addresses it aggressively.

Pat

David,


Sorry to hear about your continued troubles. Hopefully they all can come together and figure out the cause, wishing you all the best going into the new year, in our thoughts and prayers.

David,
2013 has been a terrible year for you in many ways, although on the bright side the VA did issue a long over due payment that has relieved financial issues for you. The nerve issue is frightening, and I wonder if with all the other issues going on, somehow the real cause is missed or overlooked. The new set of eyes from the neurologist may be able to either find the obvious or discover the hidden causes of your deterioration. Let's all hope and pray that 2014 will be the year that a new plan of treatment is found to halt the progression, and bring you relief.
Merry Christmas and best wishes for a Happy New Year.

Kerry
(Beachbum)

Oh gosh David. I'm sorry that you're struggling so much with just walking around. ((((((hugs)))))) I sure hope this neuro doctor will be aggressive with the testing, etc., and come up with the cause of this. I will be praying that you don't fall and hurt yourself. This really worries me. Take care my friend.

love and hugs
Loretta

thank you, Loretta. hope you are holding your own, as well.

Ed, that's the current thinking. It's hard to believe that my "core" area is so weak in general, even after nearly 3 years of physical therapy. No matter how hard we try, there has been no improvement in strengthening any of that area, despite targeted therapy that is suppose to help. Appearently, the radiation damage is just too extensive and widespread. After I had the major surgery, Urostomy, in 2010, much of the work and repair in that area only made things worse. I never really fully physically recovered from that surgery. All I can do, is keep hoping, keep trying, until when/if the doctors can pin point anything in particular that can be fixed.

David

David
I know you are having a bad time and I don;t have the ability to nake you better, so I'll come at this from another angle.
Are you wearing any kind of padding or have you had any advice on how to fall safely, so that if you fall there is less chance of hurting yourself. (The last thing you need is to add to your problems with a broken wrist, hip, collar bone or similar).
There are websites with tips about falling eg:www.fivestarseniorliving.com/resources-gravity-not-friend.php
tih
But I sugegst asking an expert perhaps your PT person can advise you

All the best.
Alf

Hang in there David. Hoping that the new year and new docs will bring you some relief.

thank you, scooter. appreciate that

carl, thanks. wish my own advice could help my situation, but as my doctor says, I am chocked full of issues and complexities. but, he never gives up, and I am not giving up, so onward and upward to go.

david