Skip to Accessibility Tools Skip to Content Skip to Footer

Can’t Take Much More Bouncing From Doctor to Doctor

I am a 52-year-old male with a colored history of medical issues. I’m number 4 in a family of 6 males and I seemed to be the one with all the medical problems. When I was 12, I was diagnosed with type 1 diabetes. That was pretty devastating, but I had a great support group. Of course, there is no better support than family.

Diabetes, iritis, and kidney problems

I was told by everyone that this will have no effect on my life, and I can do anything that anyone else can if I just take care of myself. So went back to school in the eighth grade, and joined the football team. I was very active in sports. On my 1st practice, I had a hypoglycemic episode that shut down the practice The whole team was looking at me while the coaches are trying to find some kind of candy, juice, or anything they could. I figured out then that my life did change and I quit the team and never joined another.

Fast forward about 10 years later, I got a condition the eye doctor called iritis this was very painful and irritating, but it only lasted 3 weeks or so. Then when I was 35, my kidneys failed and I went on dialysis. Fortunately, I was young and strong enough to qualify for a kidney-pancreas transplant and was told it would more than likely happen faster than a kidney transplant since the list was a lot smaller than a kidney alone.

Pain but no injuries

After a little more than a year of dialysis I went under the knife. It is a successful transplant, and I am currently 15 years post-transplant. Within a year of the surgery, I went back to work. Then, I started having unexplained pain in my heels. I got an X-Ray but nothing wrong could be seen.

Since part of my immunosuppressant therapy was prednisone which can weaken the bones, I was put on Fosamax to strengthen the bone, so that would go away. It didn’t, so they said it was plantar fasciitis which seemed strange to me since the pain was right on the back of the heal… “but you’re the doctor”.

Then my lower back started to do the same thing. I would go to bed feeling fine and wake up with pain so bad I could hardly make it to the bathroom. This scared me because I didn’t get injured, so I went to the ER. They did there CT, and MRI, and came back saying there is nothing there to see. So, they said it had to be sciatica.

More doctors and specialists

Their attitude changed a bit. I believe they thought I was faking the pain to get medication. This through the next several years would recur every 3 to 4 months and would last a few weeks to a month. Finally, I went to the Mayo Clinic ER, and they did another CT.

They didn’t like something they saw so they asked for an MRI. Still not liking what they saw, they wanted to admit me to the hospital, but unfortunately, my insurance would only cover the ER at this hospital. So, they released me with instructions to see every specialist until I find out what this is.

I went to a spine specialist, a blood specialist, an infectious disease specialist all saying that they see what Mayo sees, but that this isn’t in their realm of specialty. Yes, even the spine specialist. Finally, my kidney doctor asked me to see a friend, and doctor specializing in cancer. She also said this doesn’t look like there is cancer, but she said also had a friend who was a rheumatologist and set an appointment with this doctor.

So, do I have AS or not?

I saw the rheumatologist and after many questions, some blood tests, and X-rays of the SI joints, she diagnosed me with ankylosing spondylitis. Unfortunately due to the therapy, I am on for my transplant I can’t go through the usual treatments for this condition.

Like Azalea, bless her heart, now I had to change doctors for insurance reasons, and my new doctor isn’t convinced that my problem is AS, he looks at me like I should be excited about that, but even though there wasn’t a lot I could do about it, I thought I at least had an answer. Since finding out what AS is I have done nothing but research it, and I feel like everyone is telling my story.

I am very confused and look forward to any advice.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Lawrence "Rick" Phillips moderator
    2 weeks ago

    AS is notoriously difficult to diagnose. There is never a simple path forward. There is not a single or even multiple test to make the diagnosis.

    Instead it is a clinical and to some degree an imaging diagnosis. There are some good resources online. Of course I think you have found the premiere place to learn form other patients, but I also recommend you look at the Spondylitis Association of America and the Arthritis Foundation website.

    Not every resource is great for every person but I trust you will find good support at one of those or on one of the Facebook groups.

    It is great that you have joined our little community and we are delighted you are here.

    rick – moderator.

  • Poll