Sunday, November 15, 2009

Prayers Needed

It has been confirmed that my NY trip was a waste of time and money. The reason for the muscle biopsy was to check a specific enzyme level to confirm or deny the positive blood spot test (low alpha-glucosidase level) done in Cleveland. These results would have led to whether or not I have a Pompes Disease.

I found out this week that the enzyme testing was not done. The only way I can look at the results of this mistake is as a Praise to God leading me to a different team that can better help me and my situation.

I have spoken to a team in NC and will be sending tests to them to either confirm or deny the diagnosis this week. Results are reported to take one week.

I boldly ask for each of your prayers, anyone who is reading this, for this test to come back positive and confirm the prior testing. I have stated months ago, that a diagnosis would be SO much better than continuing the past four and a half years as they have been. I would like to know what lies ahead for my future, my children's and husband's future and would like to move on with living my life.

A positive test result would bring much needed closure and a plan for the challenges my family and I face ahead. A negative test does not mean I am fine, as some have said LOL!. A negative test means what all the other Dr's have told me .....That they don't know why this is happening to me, I'm beyond science (that's my personal fave LOL) or that they would all LOVE to help me but don't know how:(

So again, please pray for me, that this week will be the end. There is nothing else left. I am at the mercy of your prayers and God's will. As I go forward, I am trying my best to think positive, but am terrified.

Thanks to you all who have followed me, prayed for me and supported me. I will post "the news" when I hear. Just know, either way, positive or negative, I am sure I will be hesitant to talk for obvious reasons, and will be ready when I'm ready.

Many Blessings!!

Monday, November 9, 2009

NO news is Not GOOD NEWS

Sooo, 8 weeks out. No results. NY Dr. finally called back and has no idea where results are and is "looking into it". At this point, I am getting extremely nervous. Please pray that the tests were done b/c I am not doing the biopsy again, nor will I do any other tests unless deemed necessary by biopsy results. This process has been far too long with no answers and too many emotions.