- Sep 30, 2007
- Tampa Bay Area
I wish I had the words, I am very sorry for staying silent for so long... I just had so much hope before going to the Mayo Clinic, and now I have none. The entire experience so just so awful and so not what we expected. They see 2000 new patients everyday, it is a very well oiled machine and they move people around like cattle with great efficiency. I have traveled there seven times now and will never return, have spent countless of thousands of dollars and beleive it or not I have no diagnosis and no treatment plan. My uncle went with me each trip and to every appointment, the last was with the Director of Nuerology, he sat there with a straight face and told us they had no Dx and no treatment plan. I left there just devastated, that was just last week on Tues 4/23 at 7am, we left that day right after the appt and will never go back. My Dr. here at home when I saw him before that last trip was so disgusted with reports and lack of concern for well being, he promised that no matter happened at the last appt he would do something to help me. I pray that he meant it. As for me, I have lost ten more pounds, my ability to coordinate my fingers is very difficult, and my window of functioning during the day is getting smaller and smaller. I am truly scared now, and see no hope in the future. I meet with my locak gp on monday. My mom is currently in hospital, kidneys go bad and she has difficulty keeping her balance, severe anemia - her red blood cells are not producing, her blood is just out of wack and she is being kinda difficult. I am just withering away, I still work about 5 hours a day - not enough, but I all I can handle. My back muscles are almost completely gone. I just so desperately want my life back, but honestly do not ever see that happening. Please forgive me for sounding so negative - it is the reason for my silence. This site for should be a place for hope. I think of you often and pray for you all daily,, Gina, Pat, Al, crystal and all of you who have come to be a part of me. I just pray that my gp will keep his word and find me help, will find out tomorrow I guess. I'm very tired and most rest now. Farewell for now and God bless.