Maybe…

I believe we are one step closer to solving the mystery. I was trapped in bed yesterday with aches and pains and a debilitating headache so I didn’t hear the phone ring when my doctor from Mayo called. He left a message about some test results, I won’t get into too many details here until I have the opportunity to speak with him (which will hopefully be on Monday), but the diagnostic phase of my journey may be over. We may have a name for the beast that has declared war on my body and with a name we can form a battle plan. He has already contacted the muscle disease specialist at the Jacksonville Clinic so battle plans can begin sooner rather than later (again, hopefully). I hope to be able to update this blog on Monday with the name of my disease and a sigh of relief because the mask of the mystery disease has finally been lifted.

So far, the theme for 2010 is hope which has been a refreshing change from 2009 which was W#*(#&$(*#&!

One comment

  1. Monique,

    I saw the comment on my daughter’s blog today. Please email me at matthewjcrowley@comcast.net and I will give you a few contacts and some information so you can quickly get up to speed on Pompe Disease and get in touch with the company Genzyme who has the medicine for this disease. They have a great patient outreach program that will assist you with information, support your insurance review, and talk about access to meds.

    I am also in touch with doctors at Children’s Hospital of Philadelphia including a leading Pompe researcher, a specialist at University of Florida, plus a number of patients through Facebook and patient foundations. Lastly I can offer you several links where you can quickly gather honest information about the disease and treatments.

    My email address again is matthewjcrowley@comcast.net.

    Stay strong!
    Matt

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