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Dear Dr. Stoll,
At this time last year I was at the bottom of the barrel and wondering how much longer I had to live. Thanks to starting skilled relaxation shortly thereafter my life improved dramatically in many different ways. My only lingering symptom is an inability to move my neck although the limitation is much less now than then. In hopes I could resolve that issue as well I went to a Chiropractor who told me, after the third visit, that he couldn't help me and he suspected that I have Ankylosing Spondylitis from the look of my x-rays. I sought a second opinion from an Orthopedic Surgeon who ordered a bone scan and blood tests.
He also suspected AS but when the test results came back my Rhumatoid Factor was negative and my sedimentation rate was normal. The test for a genetic marker was also negative. He wouldn't make a diagnosis but referred me to a Rhuematologist since my ANA was high, I don't know the titre. The Rumy guy said that I almost certainly have Ankylosing Spondylitis and he reordered the same blood tests plus more and a chest x-ray. I feel the best I have in five years even though I still can't move my neck.
He said that it appeared my cervical spine is fused and the best I can hope for is to slow or stop the progression of disease by using new genetically engineered drugs. He also agreed that the trigger could very well have been emotional stress but that it was extremely rare for a man to develop this problem in the mid forty's, saying it usually starts in the twenties.
I go back in two weeks.
You have told me in the past that my current state may be as good as it gets but it has gotten better since. My question is this: If I can still pop the joints in my neck with some physical effort can they really be fused? If they are not totally fused is it possible to grind the overlapping deposits off by physically forcing my neck? It sounds very creaky and crunchy when I fight with all my might but I seem to get incremental improvements from doing just that. Also, is it possible for me to break my own neck doing this? I've asked the doctors but they just look at me like I'm an idiot. Also, is an abnormal ANA enough information on which to base a diagnosis of AS? The bone scan showed mild activity in the shoulders and was unchanged from an earlier bone scan four years earlier (by far the worst four years of my life) I'm not taking any drugs now because I don't need them and I'm not taking any drugs in the future just because a Rhuematologist wants to try them out on me to see what they'll do. I wanted answers and I still don't have them but what I've been told so far just makes me want to fight harder.
In Reply to: Ankylosing spondylitis posted by Formerly Tension Man on July 10, 2003 at 16:02:29:
Thanks, Foirmerly.
It is really too bad that you did not find out about the bracing years ago. You are now coping with the damage from all those years. You should be commended for your determination since you really cannot hurt yourself by forcing things although it is likely that you will finally come up against a final level of function short of perfection. Stranger things have happened though, so, keep on keeping on.
Your ANA is related to your LGS which is directly caused by the bracing that you have pretty much dealt with already. The cracking and snapping in your neck is ligamentous and not bony. The grinding might be at least partially bony.
By coping with the LGS and continuing what you are doing, at least things will not get worse. Double check the bracing archives to be sure you are not missing any options.
Congratulations on your progress.
Walt
In Reply to: Ankylosing spondylitis posted by Formerly Tension Man on July 10, 2003 at 16:02:29:
I have a friend who has/had this disease; I'm not sure if its in remission or if it has gone away.
The only thing I know what he did was take fish oil and maybe condroiten glucosamine <<< but even these I am not sure he took.
I know he took the meds his doctor gave him ie anti-inflamitory but most of the time they just upset his stomach etc ...
I have read certain things that different arthritis can be affected by ones diet (as stated here on this bb) not sure how much validity is in it but you could try it and investigate it.
good luck,
Sean
In Reply to: Ankylosing spondylitis posted by Formerly Tension Man on July 10, 2003 at 16:02:29:
Try Neurocranial Restructuring. SR is very powerful but it seems like you need something extra to help fill in the gaps.
-HY
In Reply to: Re: Ankylosing spondylitis posted by Sean on July 11, 2003 at 09:36:51:
Sean,
SR is probably the single most important thing for anyone with AS to do. See the bracing archives for options.
Walt
In Reply to: Re: Ankylosing spondylitis posted by Walt Stoll on July 12, 2003 at 07:16:36:
Well I know he didnt do SR at all; I'm just relating what he did to help his condition.
Sean
In Reply to: Re: Ankylosing spondylitis posted by Sean on July 12, 2003 at 11:02:07:
Thanks, Sean.
My prediction is that it will eventually be back unless he begins, and continues, SR.
Walt
In Reply to: Re: Ankylosing spondylitis posted by Walt Stoll on July 13, 2003 at 07:26:54:
funney thing how I remembered he took fish oil for AS is because his cat would get into his fish oil bottle and try to eat them all up :)
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