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Sue22 #412714 09/16/10 04:02 AM
Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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Royal_AS_kicker
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I second Sue22! My exercize physiologist did me more good than anyone else, because she sent me to the pool!


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

EricaK #412732 09/16/10 12:54 PM
Joined: Sep 2009
Posts: 1,236
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A friend's partner had a fractured lumbar vertebra. She had to have surgery to fix it and is able to walk without pain now. I think it is worth exploring with the right doctor.


Micki
Mom to 9
Dx'ed Ocular Herpes, Sept. '08
Dx'ed AS May '09, suffering on and off since 1979
Dx'ed Non-Hodgkins Lymphoma May '08, relapse Oct '11
mom2many #412756 09/16/10 06:02 PM
Joined: Feb 2010
Posts: 2,190
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Major_AS_Kicker
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A
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Posts: 2,190
My stepmom called me yesterday. She had been having back pain for several weeks, after a fall. She went to her GP, who had her go in for a PET scan. He said she had a fractured vertebra and sent her to a neuro-surgeon. After a MRI, he said that they wound inject a balloon below the broken vertebra, inflate it to push the vertebra up where it belongs and then inject some kind of cement to keep the vertebra where it belongs until it can heal. It seems that they do this quite often.

It is really amazing what they can do now.
Donna


Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,
gd7405 #412764 09/16/10 07:45 PM
Joined: Dec 2009
Posts: 159
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First_Degree_AS_Kicker
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Hi Glenn, i saw your post and had to get my two cents in. I know the pain very well and has been my largest complaint over the last year with several different doctors and of course nothing shows up on X-ray. My first Rheumy diagnosed me with AS. Based primarily on the fact that i am HLA-B27+ and i have all the AS symptoms. I have been on several different anti Inflamms that help a little and tramadol and Vicodin. Most recently i have tried Humira with no good results. The process with my first Rheumy was painfully slow and i had the same feeling as you that its just a matter of time before i cant stand at all so i packed up and had my GP send me to the Cleveland Clinic to have a visit with a specialist up there that supposedly deals with AS all the time. First visit was great. He kept me on the humira but switched me to a different anti inflam that did work better and also sent me in for X-rays and blood work. I came back for the next visit and all of a sudden i did not have AS according to him and he wanted me to go do PT and PM. I said ok, why. He said to repair the damaged muscles. I said damage from What because he also found defects in both ankles on the xrays but i was in no accident and my blood work came back normal. So because he did not see AS or high inflam levels he came to the conclusion that it was not AS. I had to ask, dont you think its strange that both ankles are damaged. He said well yea. I said if i am on TNF blockers and Anti Inflamms shouldnt my blood results show normal levels of inflammation. He said well yea. He must have changed his mind because he said we will just hold off on the PT and PM and he ordered a full bone scan because this scan will show inflammation and defects that the other xrays will not show. I have responded pretty well to anti inflam medicine too which i brought up. Many times for several years normal xrays and CT scans will not show AS until it has progressed. Patients with AS will have fluctuating blood results as well. I am in the same boat. I feel like i need something done now. I have a family to provide for and i dont want to waste anymore time with PT and drugs that dont work. I dont want to go backwords either and i feel i have risked this with going to a new doc but sometimes you have to get a little firm. They have many patients and cant possibly do all the leg work in researching your case. I know you feel lost. My wife continually reassures me that we will eventually get a handle on this. This is particullary hard for me because i have always been an unusually strong man. You know, captain of the football team. fastest runner(Big Head:) and now there are days my wife has to put my shoes on. Im with you man. If the full body scan shows something i will let you know. Maybe at least we will see what we are dealing with.

Thanks, Reese









gd7405 #412766 09/16/10 07:58 PM
Joined: Dec 2009
Posts: 159
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First_Degree_AS_Kicker
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Hi Glenn, i also wanted to add that what started all of this for me was the pain in my back just above my belt line and yes i can only walk for a few minutes without it becoming extremely painfull.I am at the point now where my legs start to give out so i sit or grab ahold of something. Im always leaning on a doorpost. I have advanced to the point now where its in my hips and shoulders. I have bad weeks with my neck and my arms fall asleep at night. Eyes burn. Ankle problems since my teenage years. They have done exploratory surgery on them and found nothing but inflammation. Not saying you have AS but we share the same back pain anyhow. Nothing shows any damage so far to muscle or bone. Interesting huh.

Thanks, Reese









gd7405 #412775 09/16/10 09:44 PM
Joined: Apr 2002
Posts: 12,465
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mig Offline
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Hey Glenn, nice to see you around again but sorry that you are in such a huge amount of pain.

I don't know why something wouldn't have shown up on your MRI but after all your years with AS, I'd worry that such a localized fierce pain might be a fracture or something new. Since it's gotten so much worse since the last imaging was taken, maybe it is worth asking for them to have another look, or ask for a second opinion. What does your Rheumy think of this pain?

I've had pain bad enough where I could only walk a few steps - but never as centralized as what you're describing.

Hope they can help you to figure it out soon, and I hope that your eyes have been well lately!
mig


gd7405 #412786 09/17/10 12:40 AM
Joined: Jun 2010
Posts: 545
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Hi, Glenn--

I've had continuous pain at the beltline since I was thirteen and I paid no attention to it until 2006, when I snapped the ankylized "bone" which had grown between L4 and L5 while playing golf. That's when I found out what REAL pain was, at least for me.

What good would a laminectomy do when Nature is fusing the spine already? Get a second opinion before any surgery.

I know how you feel. Sorry you're hurting so bad; hope you'll feel better soon.

John




Author: Mayan Solstice: A Novel of 2012 (http://www.createspace.com/3420054)

If you would know a man, observe how he treats a cat.-
from "The Door into Summer" (1957), chapter 1 (Robert Anson Heinlein)

Love is the condition in which the happiness of another person is essential to your own. (again, RAH)

mig #413509 09/22/10 07:50 PM
Joined: Feb 2002
Posts: 1,342
gd7405 Offline OP
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Mig,

Thanks for the response. Sorry I don't get on as much as I used to. My Neurologist suggested pain management and thats where I'm heading on Friday. I've thought of fracture before, but I went to the ER last week when it was so bad I could'nt stand it and asked them to do an x-ray. They told me if my Neurologist did'nt ask for one then they surely weren't going to usurp him and acted as if I was one of the people that go to the ER just to look for drugs. I was devestated.
Now to add insult to injury, I've been dealing with Bronchitis for the past few weeks. My PCP did a check x-ray and found a spot on one of my lungs. Now I have to go to the hospital for a CT. Hopefully thats nothing either. I also have all kinds of other stuff going on this summer that I'll dedicate an entire post to later.

Thanks,
glenn


"If God were small enough for your minds, He wouldn't be big enough for your needs."
mom2many #413512 09/22/10 07:57 PM
Joined: Feb 2002
Posts: 1,342
gd7405 Offline OP
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I researched a lot of the symptoms and that's what I thought too, but the neurologist said if the MRI did'nt show it in May then it can't be. But the symptoms are SO much different now than they were in May.


"If God were small enough for your minds, He wouldn't be big enough for your needs."
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