Spondylitis Association of America
Posted By: cipher AS cured by VA - 08/11/18 09:44 PM
After being treated by VA rheumatologists for AS for 8 years, I have been told that I do not have spondylitis. I was told at least twice during that time by my Dr that I did definitely did have the disease and just before the Dr cut me loose, I was seen by another rheumatologist in the VA system who said the inflammation on my current CT scan would only be caused by AS or something related to it. The VA would not do an MRI to confirm the diagnosis.

Has anyone else had this experience or heard of anyone else who has?
Posted By: Breeana Re: AS cured by VA - 12/25/18 06:30 AM
I know it's been a little while since you posted, but to answer your question, yes. The VA is limited by resources and driven by layers of protocol. With that said, I was discharged in 2011 for fibromyalgia, but had all the presentations of AS. I wasn't able to get my diagnosis before I left the military. That led me down a frustrating path to try to find someone who would treat all of these collection of symptoms. So, I had AS the entire time, but didn't know what I know now about the disease and had no idea how to be my own advocate. I saw four rheumatologists in the el paso area and no one could diagnose me as my blood work was fine, and no imagery showed any signs of fusion. I asked my doctor's over and over and over to help me find out what my pain was and finally I moved to WA state and saw a rheumatologist in 2015 who diagnosed me with AS, about seven years after I first started having symptoms. This disease does not go away, it is not cured. I have seen it go into a remission where people are symptom free for years.

Long story short, if you want to get a MRI, go see another doctor. The VA won't do any "unnecessary" tests. I got them to do quite a few tests for me, but I also had a really bad experience with my primary care provider who called me at home and chewed me out for requesting additional tests and care. Do not put up with being abused as a patient. MyhealthEvet has all of your medical records since 2013 at the VA on their website. Login and go to the health records tab. It has all the tests and lab work that you've done over the last several years. It is a pretty awesome feature. I hope this helps.
Posted By: cipher Re: AS cured by VA - 01/12/19 07:09 PM
Hi Breeana,
Thanks for your reply. My original post was kind of snarky and I've been meaning to elaborate on what I wrote. Of course the VA did not cure my AS. I've been lucky (maybe) in that I've always had good, timely care at the VA - in Boise, Pocatello and Salt Lake City - but there were gaps in my use of the VA's services.

I enlisted in the Coast Guard in '69 and served til '73. I began using the VA about two years after I was discharged because I had no health insurance at the time. My mom and dad both served in WW2 and the post service benefits were a big selling point they made toward enlistment in the military. They didn't have to try too hard to convince me. I grew up in Maryland and we always spent a great deal of time on boats and around the water. I'd always planned on enlisting in the service and had wanted to join the Coast Guard since I was a little kid. By the way, my draft lottery number was 18 the first year so there was a certain impetus to enlist.

Although my symptoms started while I was on active duty, I wasn't diagnosed with AS until about thirteen years ago. At the time I was diagnosed, I was working for a company that had great benefits so I wasn't being seen at the VA. (I've used the VA only when I had no other medical coverage.) I retired on disability in 2009 (AS) so I lost my med insurance. I decided to go to the VA one fall for a flu shot. I was told that since I hadn't used the VA for some time, my coverage had lapsed. WTF!?!!! WT actual F?, is going on here? I wrote an angry, somewhat intemperate letter to my Senator suggesting that he and Congress balance the budget on someone else's back, perhaps someone aside from the country's veterans. He said in his letter back to me that he was "disturbed" by my letter. I suppose he was referring to the tone of my letter, although it could have been the absolute injustice of a veteran's GI Bill benefits "expiring," but I doubt it. He did have me reinstated for medical care at the VA.

A Dr outside of the VA originally diagnosed my AS. I was always happy with his care so I have gone back to him since. The sticking point with the MRI at the VA was that I have a pacemaker. Fortunately, the cardiologist who installed it implanted an MRI conditional pacer so that I would be able, having AS, to have an MRI. The VA's policy however, at least in SLC, was "if you got a pacemaker, you get no MRI," period. The VA rheumatologist was the person who had brought up the MRI at the outset as the standard for diagnosing AS.

I am HLA B27 positive. My original rheumatologist - the one I'm seeing now - explained why he still stands by his diagnosis. I had applied for Social Security Disability Insurance when I "retired" and was able to get it on my first try so he must have convinced them as well. As an aside, I developed bradycardia (nothing to do with the popular TV family) while I was experiencing an episode of the shingles a few years ago. Apparently, the shingles can affect other nerves in the body and cause other nerve conduction diseases and prompt the onset of all sorts of nasty stuff as well. When I went to the ER, my heart rate was 28.

I've learned a lot from this site since I found out about it - There is lots of good information here and this forum is great, but I don't come here regularly. Thanks for taking the time to reply.
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