Wednesday, 23 April 2008 07:49 Host: 87-194-201-161.bethere.co.uk

Hi everyone.
I'm sorry to do this but I'm going to have a controlled moan.
I was diagnosed with A.S. 12 years ago, but after seeking a second opinion an MRI has indicated that I have been mis-diagnosed. My rheumatologist's response has been to claim the diagnosis was A) a mistake by a clinical #@*%!istant in 1997 & B) a clerical error. This was not the case - he diagnosed me himself in 1996!
I now have a non-specific spondyloarthropathy with no further effort being made. I am on large dose analgesics but am in terrible pain - my diagnosis has changed but my symptoms have not.
I am HLA-b27, and am still taking the NSAIDS to control the pain, but I have morning stiffness that can last 4 hours and almost constant sciatic pain down my left leg. Fibromyalgia and a psychogenic component to my pain have been diagnosed by my Rheumatologist, and whilst this explains the fatigue I'm living with, I don't feel this is the whole story.
I'm feeling a bit let down and alone - living with chronic pain is a depressing existence.
Any comments would be welcome, and sorry if I've put this in the wrong place.

Tuesday, 22 April 2008 10:37 Host: 216.sub-75-202-97.myvzw.com

Hey -- don't get discouraged! I've had AS since 2000 and am in better shape now. I take Sulfasalazine for inflamation, Trazadone to sleep better, and Omega-3, L-Lysine, Multi vitamin, and MSM. The most important thing is to exercise!!! I try to jog every day and complete 30+ miles a week and can run really fast these days...between 7 and 8 minute miles on my runs. When I was crippled with AS, it took me an hour to walk my first mile -- now I placed 121st in the '08 Cooper River Bridge Run. Keep at it -- exercise and fortify your health.

Monday, 7 April 2008 15:38 IP: 67.130.93.131

It is so nice to have another resource. Not to mention that it's nice to have someone else confirm that you are not crazy - as many doctors who do not have any AS knowledge seem to think!
Thank you so much for your site.

Tuesday, 1 April 2008 12:11 Host: c-67-187-54-196.hsd1.ga.comcast.net

I have lived with AS for so long now, that I no longer have any memory of what life was like without it. I hope to gain some insight here, that might actually contribute to better management. I live with the mind-set of an "ATTITUDE OF GRATITUDE" for my good days, and I pray that some new treatment is just on the horizon...

Monday, 31 March 2008 17:04 Host: h69-131-241-35.hydnky.dsl.dynamic.tds.net

Hello fellow sufferers,
I am 35 and I've been in pain since I was 17. It was only two years ago that I was finaly diagnosed. I'm still in a lot of pain despite being on vicodin. If anyone out there is on any medicine that helps, please e-mail me and let me know. I would appreciate it.

Wednesday, 26 March 2008 11:20 Host: 089-101-186135.ntlworld.ie

I just can't beleive that I came on your website (through the LDN one). For me it has been a lonely few years since diagnosis. While AS verbally has quite a ring to it, in the 5 years since it was diagnosed I'v not met one person who also has it. The complications for me by the way are trapped nerves which are adversely influencing blood flow to the left ventricle of my heart. Thank you all for being out there, I will be visiting ofter !

Friday, 21 March 2008 17:09 Host: 203-79-69-250.cable.telstraclear.net

Hi,
I have recently been diagnosed with possible AS. At times it all seems overwhelming, but it helps to know you're not alone.

Sunday, 16 March 2008 12:54 Host: 70-56-128-208.albq.qwest.net

I do not know if I am a one of a kind AS patient however my situation is unusual enough that my rheumatologist is unsure of where to turn to or what to do with me. My situation is as follows; I have C-1 thru C-7, T4 thru T7 and the entire lumbar region involved. My immune system is such that every intrusive surgery that i have had has resulted in the entire immunity system going haywire. This was evidenced by my going from 155 pounds to 86 pounds in 5 weeks after surgery. Here is the kicker, my neck and thorasic involved spine has become so unstable that even bending over results in m#@*%!ive nerve pinches due to a total lack of fusing and near total loss of all discs. The lack of fusing according to my physitions is due to my having been on prednisone for 28 of my 29 years with AS. I live in new mexico USA but will travel as needed to see the right doctor. Any ideas? Please respond to my e-mail address onedragonmaster@yahoo.com as i am not yet a member here...thanks;;;at the end of my string...

Monday, 3 March 2008 18:05 Host: mh-200-163.dsl.mhtc.net

I was diagnosed with undifferentiated spondyloarthropathy 20 years ago. I've had knee pain and swelling for years but it wasn't until I read Carol Sinclair's book that I realized that the TMJ, shoulder/neck pains that no one could explain and even the GI symptoms I have are all related. I have no diagnosed back symptoms (thank goodness). I'm hoping the NSD helps reduce my symptoms and I think to date it has but time will tell for sure.

Wednesday, 27 February 2008 22:07 Host: C-61-69-255-7.for.connect.net.au

It has been about 10 weeks that a found out i have AS. It all falls into place know. I have had back,neck,and joint pain for a number of years.I still am having trouble getting my head around things. I don't have a support group to talk with.
If anyone knows of such a group in QLD Australia I would love to find out more.
Thanks.