Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Lots of questions?

Hi John
I was hoping you would see and reply to this post.I think that doctor should get over it too,what a jerk!!!!! I was really depressed yesty but coming here and finding all these replys and information has really helped a lot.I have a lot of the symptons of AS,but because I hurt all over with the FM thats all he wanted to hear.The FM doesnt explain the joint pain or my spine being stiff.I will be asking to see someone else thats for sure now!!!! Thanks heaps

Shirl

Dear Sparkels,
I can't believe your Rheumy - he said you had Seronegative Spondyloarthropathy - that is the name of the family of Spine Arthritis that AS belongs to. OK you might not have AS but you have a version of one of the five Seronegative Spondyloarthropathies, as mentioned in earlier messages.
I'm also not surprised that your blood tests were normal, that is what the negative in Seronegative means.
Family history is also a big deal, my brother had IBD which was the contributing factor that lead me to be diagnosed.
I know how you feel - I was 30 when finally diagnosed after 12 years of back pain. My X-Rays also showed sacroilitis from the age of 20 but I kept being fobbed off by doctors. Finally I asked for a colonscophy and low and behold I had Crohn's Disease (probably the world's mildest case!) My doctor had never seen anyone cry in joy at being diagnosed with Crohn's.
Anyway keep your head up and get another opinion!!!!!!

Hi Kat
Thanks for saying I belong here,I was really starting to doubt myself.But after reading these replys I still do believe I have AS.I havent got any swelling and my blood work is OK,but that still doesnt mean I dont have it.I do have a lot of the other symptons.My local doc is great,she will listen to me,and try to help all she can.At least I have her on my side,thank god!!!!! I couldnt believe it when he made that remark about being HLAB27 positive,what a jerk!!!!! Thanks again for making me feel like I do belong!!!!!

Shirl

Hi Mig
Your right,I looked up Bilateral Sacroilitis and it is a sign of AS,nothing at all to do with FM.Your right again he is a bonehead....lol....he is supposed to be the best,he is professer for gods sake.But he never listened to what I was trying to say,he had FM in his sites and that was what he was going for.Thanks Mig.

Shirl

Hi Connie
Good to see you!!!! Hope your doing well. I will be firing this jerk alright,I had my doubts yesterday,but today I dont feel so down.The pain I am feeling real now has nothing to do with FM,thats for sure.He really had me doubting myself,I was starting to think it was all in my head,but I know different now!!!! Thanks.

Shirl

Hi Wind_Rider
Gee your reply really made me sit and think about things.Sounds like you have had a really bad time of things,I hope it improves for you.Hey you should of wrote on the exrays....lol.....you didnt have to see him again.Some doctors are unbelievable.Why dont they take the time to listen to us,then they mighten screw up so much.When I looked up seronegative spondyloarthropathy it took me to a site that explains its all.It has nothing at all to do with FM,but it has to do with AS.So I dont know what this idiot doctor was thinking.Its wrote on the bone scan thats what it is.But to him that meant nothing.He shouldnt be a doctor thats for sure!!!!! Thanks for sharing your story.

Shirl

Hi J.R
Thats what had me confused,the way this so called doctor spoke you have to have swelling to have AS.Thanks to you and the others I now know thats not the case.Thanks!!!!!

Shirl

Hi Sunny
Yep, a lot of what he said just doesnt add up.I never even got a chance to tell him that my brother has AS,he never asked about family history,and he wouldnt let me tell him stuff I needed too.He only flicked through my exray reports I took him,he knows better than exray reports,he thinks!!!! I thought family history would of been important,he wanted to know who I live with,whats that got to do with anything,but thats all he wanted to know.Some doctor he is!!!!! Thanks.

Shirl

Hi Shirl~

I'm with the majority here... This new rheum is a QUACK!! Sounds JUST like my last rheum... "You don't have AS because your SED rate is normal, blah blah blah"...

My NEW Rheum says "Most people with AS, their SED rates ARE normal"...

Everything in your xrays sounds like AS to me. Lots of "spondy's" here and there...
You're HLA pos+ (so am I).

Get another rheum. I did and it paid off BIG time. At the 1st visit, he said "You have AS, no question". and at the 2nd visit, he handed me a rx for Enbrel.... He's a good doc!

My blood just boiled after reading your post... It was the same feeling I got with my last rheum...

Best of luck!

Stacie

Hi Stacie
I know what you mean about the blood boiling....lol....I was to shocked at the time to even think,but going home I thought about what he had said,and I got angry,then depressed,now I`m angry again.I have just finished writing a letter to give to my own doctor tomorrow.I`m better off if I write it down and just give it to her to read.It explains why I think he`s wrong and all the reasons why I think I have AS.If I go in there and try to tell her I know I will forget most of it....lol.....so I wrote it all down.I will update everyone tomorrow and let you all know how I get on.I want to see your rheumy,but its a bit far to go....lol....thanks.

Shirl