Steffi's Story: Living with Ankylosing Spondylitis Steffi's story on her road to an Ankylosing Spondylitis diagnosis and the obstacles she has had to overcome Our Facebook page- www.facebook.c... Our Website- www.ankylosings...
Your story means a lot to me. I've been diagnosed with Fibromyalgia for about a year, and just recently diagnosed with A.S. I was put on prednisone before I got the results of my MRI, and it was one of the worst things ever. Then I had a shot in my butt of god knows what. The medical assistant said the thing real quick. I can't take nsaids or anti inflammatories, because I over did it awhile ago, so they affect my stomach. My hip went out the same way and that's exactly why I feel I can connect with you. And I am the same way in regards to work ethic. Are you using any walking aids?
My sacroiliitis flared up terribly & I was officially diagnosed with SpA after I had a surgical abortion 4 months back. Wish I had cancer instead of AS. Even cancer is curable in its initial stages, but not AS! This is the worst!
I could see why you felt that way totally valid. It’s very hard disease I just want to fight for this. So I want to know more. Reach out with your experience .
Are you not willing to share, do you have AS? I am trying to find those whom have it as I do. And crazy but I can’t find anything within the last year or two. It’s very old and I am so thankful for that but why are other people not talking about this.
Yeah, the rheumatologist I first had didn't like me anymore after I researched and decided not to take the drugs he prescribed. Some of the men doctors really don’t like it when female patients don’t follow their directions. I changed my diet, and found a new rheumatologist. She respected that I didn’t want to take the drugs but still helped me.
It has been so hard for me to find any support for this disease! I was finally diagnosed in 2014 and there are NO rheumatology doctors in my area so I am just stuck!
Hi . I recently had this same conversation with my Mom. I was 14 when I was diagnosed with Pilonidal Sinus , it was after that I started having problems with my knees and lower back. I have a Rheumatology appointment coming up , I will mention it to him. Thank you for posting this.
How do you survive the nights? I suspect I have this and the nights are so painful I panic. My joints also have that poping sound now, all over and Im afraid to move as normal. I dont know if its AS, the emdical care insists its psychological and refuses to investigate. I'm so scared..
I don't think I know anyone with AS who was diagnosed quickly. Especially those of us that don't have the gene for it. That said I wonder if you worry about progression of the disease without treatment? I've been on almost every Biologic and have had massive allergic reactions to most. I'm also alergic to NSAID'S and the steroids have been used too often for them to work anymore. That's also something they wont always tell you, the steroids wont work forever. Currently I am being treated with Opioids and Humira. The Humira has been stop and go for over a year due to infections. I'm on weekly injections and now on week 5. I've only had one flare and it only lasted 48 hours. That said I am seeing progression of the disease. My rib cage, neck, shoulder and spine movement is all down. So that is why I have chosen the biologics. I have 3 kids to raise and I can't afford to be in a wheelchair or have a machine breath for me or pump my heart. We all have to make the best choice for our lives. I have to slow down the progression and I'll do anything to make that happen. Also I'm on an antiinflamatory diet/a stricter version of the Fodmap diet. It really does help, but it's definitely not for everyone. Good health to you and yours!
Looks like no responses from the founders of this site, it's now Jan 2020 No New videos posted, no New updates that I have found from them, (Vicki or Stephi) except new comments left by all of us.. Does anyone know what's going on with this channel? I Was really hoping to subscribe but doesn't make any sense if there is no new info or videos being posted, I was excited to find the channel through Vicki's story but Nothing new for many yrs posted, Hope their all okay, they were so informative.. Please advise if anyone has more info about this channel Thankyou
Why do we have such a hard time getting diagnosed? Maybe it’s because there is no doctor wanting to deal with the Spine so we have to suffer because of it !
How is it that you’re video along with one other is the only AS you can find on live real camera? Have you had trouble with others being honest about their experience.
It’s been so long what is your view now? I agree with you entirely here and I feel many others are relating. These medications and the low probability that it helps AS patients is real. And the side effects don’t seem worth what we already have that is awful enough.
