One Step Forward, Four Years Back

This blog post is a tad overdue; to be honest, I think I have been apprehensive to talk about getting a second opinion, what that means, potential outcomes, and everything else that has been happening surrounding the appointment.

IMG_3924It almost didn’t feel real that I would get a second opinion because I scheduled the appointment back in October/November. After waiting months, I finally went to UofM this past Tuesday to meet with the Rheumatology Team there. As I explained previously,
the second opinion came about because the status of my health issues and treatments have been relatively poor in the past year. I have had to up my dose of my Remicade infusion, up my dose of anti-depressants, recover from about 6 different illnesses, and add Methotrexate injections. Suffice it to say, after all of this my blood work is still a wreck. My inflammation levels are still high. And most importantly, my quality of life is and has been less than ideal.

We’re a little ways away from having some answers, but it helps me to record these appointments and new perspectives. I will say, I’m extremely pleased with the doctors I met with at UofM. I have never experienced such thoroughness with my health history, Medical_supplies_and_equipment_(15834977505)treatments, scans, symptoms, feelings, opinions, etc. as I did during that appointment. In total, I spent almost 4 hours in the clinic and left feeling at least cautiously optimistic to getting some answers.

The doctors asked tons of questions and ended up running lab work (15 vials of blood!)
and extensive x-rays (about 20 different scans/positions). They also needed a few more records and scans from my doctors here in Grand Rapids, so I have those being sent to them now.

The question for all of this is whether or not my diagnosis of Ankylosing Spondylitis holds true. The UofM doctors are not convinced I don’t have AS, but they are curious about the symptoms and test results that don’t fit that diagnosis. Maybe it’s an additional diagnosis altogether. Some of the things they through out there as potentials were celiac disease, AS, Lupus, Rheumatoid Arthritis, foreign bodies left from surgery, and a few more.Chest

In fact, the Chief of Rheumatology, who I met with along with my new doctor, made a good point. He asked me to tell him how Remicade was going, and I said that it has worked better than any other drug I’ve tried before that. So he says, so you consider yourself well managed disease-wise? And obviously I said, no not at all! His response: so what makes you think Remicade is working for you then. Touché, doc, touché.

I heard from one of the UofM doctors on Friday evening as he called me to discuss a few of the preliminary lab findings. Fortunately, and unfortunately, my x-rays are prestine and look good. This is obviously good news, but it could just mean that my diseases are controlled or under treatment and not showing up on those scans. The blood work is a different story. As he stated, and I suspected, there are a number of things off on my lab work: high levels of inflammation, high levels of uric acid, positive for ANA (antibodies), elevated Sed rate, low red blood cell count, slightly elevated white blood cell count, and a few others.


Phew. Well. I’m not surprised at my lab work being wonky. It certainly explains how I’ve been feeling. But it leaves a lot to be considered. For now, we’re trying a drug that is used to treat Gout. I’m to take one pill a day for a week, then if symptoms improve, call UofM. Otherwise up to two pills a day for another week and then call with how that makes me feel. They’re using this drug as more of a diagnostic tool than a treatment. Seemingly,
this will give them more answers. I pick up the drug tomorrow.

After we try that drug and they review the rest of the records being sent their way, we’ll move forward with other options. If this drug doesn’t work, it was suggested maybe I go off of ALL medications to almost start with a clean slate in my body and see how my symptoms react to that. I won’t lie, that scares me. A lot. I expect a great deal of pain if that happens, and a hard time day to day. I worry how it will impact the other aspects of my life. But I guess I will cross that bridge if and when I come to it.

That is pretty much where we stand for now. Still a lot of unanswered questions, but I feel as though I have some people digging deep to figure out the answers. We shall see.


Chronically Kristin

4 Comments on “One Step Forward, Four Years Back

  1. So glad you had such a positive experience; that must be so reassuring. Hopefully they can make a diagnosis without you needing to come off all meds but if not, then I hope that is worth it!

    Chronically Caitlin

  2. Good experience with a second opinion and I am glad that they were so thorough. I will anxiously await the update but not nearly as anxious as you are. Thanks for blogging this Kristin. Wishing you strength over the next two weeks.

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