You're absolutely right, Kathy.

Okay, I need some advice. As you may have been able to figure out, we have been turned down by D's insurance company to go to Rochester for a full diagnostic visit.

Here is the appeal letter I just wrote. Too heavy? Too light? Too emotional? Not enough of....?

Opinions, please.

I am requesting that the denial for me to see Dr. Ahalskog at the Mayo Clinic in Rochester, MN, be reviewed and reconsidered.

I am not simply requesting a second opinion on my diagnosis of Parkinson’s or Shy-Drager. I am requesting that I am seen by a cadre of specialized neurologists and movement disorder specialists to determine exactly what it is that inflicts me. I was understandably diagnosed with Parkinson’s 5 years ago, but since then it has become quite apparent with doctors attending to me, that indeed, I have another disease. Since then, the possibility of Multiple System Atrophy, Shy-Drager and Parkinson’s Plus has been tossed out as a diagnosis for what ails me.

Last summer, I signed up for research studies at the Mayo Clinic. The diagnosis of the rare disease of Shy-Drager afforded me a chance to participate in several tests to determine if Shy-Drager is the appropriate label for my disease. It would also determine if I am receiving the appropriate treatment.
After these tests, it has been decided that I do not have Shy-Drager, but another unnamed movement disorder.

The doctors in my local group are unable to provide the necessary diagnostic team work needed to finally determine what it is exactly that I suffer with and therefore how best to treat this disease. It is to this end that the neurologists that I have met with at the Mayo clinic have requested that I visit one of their own movement disorder specialists for an initial visit. This specialist, after conducting appropriate tests, will then see that I am able to see the proper neurologist for diagnosis and treatment.

Without this approval by my insurance company to visit the highly recognized diagnostic team at Mayo, it is doubtful that I will know what my disease is before I die. Then, upon the information provided by my autopsy, perhaps it will be determined that I could have lived for a few more years with a proper diagnosis.