Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New to site and officially dx .

Hi, I just would like to say that i have been reading everyones stories and i can say that i am not the only one out there with this scary and confusing disease which seems to get diagnosed way to late. I have been with a reumatologist for 5yrs and she just realized that she didn't test me for the gene-oops! The only reason she did this past May,because my pain managment Dr.(who she referred me to and they didn't send records to each other) had me dx with AS. 3yrs ago. I had x-rays done which i had to beg her to do of si joints and she said they were normal. I also have rsd severe in both hands to where i don't have blood flow in them more in left. So my rheum always said i would not be a good canadate for meds since my nervous system is messed up. Anyway pain mang dr and family dr both i love dearly decided to do mri and guess what they are fused and AS has gone to t-spine and c-spine. my rheum. has been fired! My pain mang. dr thinks she is to new and is scared to treat me cause of rsd.

My family dr is going to try to get me into mayo clinic due to hand. No one wants to do surgery cause rsd travels but i could lose hand, but in the meantime he is referring me to a new reumatologist. thanks to everyone out hear on these boards i was wanting to be dx but now that it is here i am scared. I had my si joint injection and finally working only took two week which is usual so i am going to get stretchin

Hi Laurie and welcome to KA!

I am sorry to hear that you've had such a rotten time and long delay to diagnosis but glad that they've finally identified AS and hope it will prove helpful to know what you're fighting. I hope your next Rhuematologist will really help and that the Mayo clinic can find a way to help your hands. That sounds so painful!

Glad you've found KA and hope you enjoy it here!
mig

Hi Laurie,

Just want to say hi and welcome. KickAs is a wonderful site filled with supportive, knowledgeable and funny people. I think you'll find lots of help here.

I'm sorry you have AS but glad you've joined us here.

Laurie - where in Il are you? I can send you a docs name if you want.

Jewelz

Hi Laurie and welcome aboard
Better late DX than not at all! You will find some terrific support and very caring people on this site. And...the hiring and firing of rheumatologists is a popular topic of conversation here.

What is wrong with your hands? I am curious because I am having a really hard time with mine; especially my right one. I see the rheumie next Tuesday with mine.

I can't take the big gun drugs because of the way I react to them supposedly from my CNS involvement with Lupus.

I am glad you are here.

Hope you get some help. I have been to Mayo Jacksonville and it is quite a place.

Blessings.
Possi

Hi Possi,

Here's a helpful link that explains Reflex Sympathetic Dystrophy Syndrome, which I think is what Laurie is referring to. Please correct me if I misunderstood rsd, Laurie.

Here's the link:

http://arthritis.about.com/od/rsd/a/rsd.htm

Hi to everyone and thanks for the welcome. I feel some of my fear has been lifted since i have found this forum and Know i am not alone and that there are others who know our ups and downs with AS. Regarding my hands i had a mad man of a pain mang dr. when i first got sick he did a cervical epidural and hit a nerve of course he said i moved which i know i didn't i let this man do several procedures one radical and outdated and never even twitched my hand closed as soon as he hit nerve and the hand never would open, it took about a week to even do that but it also felt on fire. I ended up in er later that night and saw his assoc next day and never him again. They put me on neurontin and more pain pills methodone and oxycodone and sent me to pt twice which the therapist said he hit your nerve didn't he. It has progressed to where it is very cold and now is in other hand they sweat and are blotchy but the big problem is i am now dropping item and having a hard time grasping items as well. I have been dx with rsd. My nervous system thinks the injury is still there. I had a doppler done low blood flow in both but left more severe. I need surgery but rsd is tricky it can spread throughout body when aggravated so drs are puzzeled as what to do.

I live in Carrollton as small town south of Springfield just moved here after being in Fairview Heights few minutes from St. Louis. Went from being a city girl to a country girl and sometimes it is very hard because it is a long drive for everything and as you know with AS atleast for me with in 15-20min i am HURTING!!!

Hope everyone has a good day. Mine has already started out to be an ugly one.

Hi Laurie and welcome to KA!! I hope you get as much out of this place as I do!! And I pray that the pain situation gets better for you...hang in there!!

Hi there Laurie D. Welcome to the KA family clan. Glad that you found us.

So sorry to hear about the Reflex Sympathetic Dystropy (googled it up!) in your hands, sure does sound horrid painful. Looks like RSD can attack the feet, and shoulders and has been known to attack the knee joint...oooh-errrrr. The Mayo has a pretty sound reputation, so will be interesting to see what they come up with in relation to your hands - hope so much that they can 'positively' help you.

Had to smile about your rheumy - yep, as a member posted, 'we' (here) are quite good at dismissing/firing our rhumies! (Have happily dismissed/fired three of mine in the past - and no doubt they won't be the last!) But at lest it sounds like you have a good pain management doctor and a 'listening' GP. First hurdle in winning the medical battle is to have a GP who actually 'listens' and also of course 'does'.

Good stretchin, and Go well -

Molly C (France)
Keeping on Keeping on (as one does)