Ernie Posted January 24, 2008 Report Share Posted January 24, 2008 Hi,I am so happy that I will be able to see a new researcher who is interested in my rare case. She has received the detailed of my syncopes and paralysis and does not seem to be freaking out at how sick I am. She might be testing me for 2-3 days. I hope she finds more understanding into my case and will be able to prescribe me better medication to improve my quality of life. Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 24, 2008 Report Share Posted January 24, 2008 That's great that she is interested in your case! I hope that the testing goes well and that you are able to get some good answers and better treatment.Let us know how things go.Rachel Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted January 24, 2008 Report Share Posted January 24, 2008 wow ernie that is awesome i wish you the best of luck with this new researcher! i look forward to hearing if you get some good results!much love and many hugslinda Quote Link to comment Share on other sites More sharing options...
pat57 Posted January 25, 2008 Report Share Posted January 25, 2008 good luck! Quote Link to comment Share on other sites More sharing options...
Sushi Posted January 25, 2008 Report Share Posted January 25, 2008 Ernie,What kind of researcher is she? I'm sure we'd all be interested to know what she is working on, and what she tests you for. Hope it goes well for you. Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 25, 2008 Author Report Share Posted January 25, 2008 Hi Sushi,She is a neurologist,She will be testing me for the muscle weakness and hopefully paralysis. The testing will depend on my interview when I get there. I have about 10 hours drive to see her. I did not get the papers yet. My PCP called me to give me the good news that I had the appointment. He had to fax my medical file and see if she felt that I fitted her research criteria. I never thought I would be accepted because all the neurologists have refused me so far, so I was surprised when I got the good news.I told her secretary that I did not want to travel that far if the doctor did not feel that she could help me so that's why she studied my medical file more thoroughly than with the other patients. I did not want another flop. Quote Link to comment Share on other sites More sharing options...
Sushi Posted January 25, 2008 Report Share Posted January 25, 2008 Bravo! Keep us posted. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 25, 2008 Report Share Posted January 25, 2008 I hope it brings new answers. Quote Link to comment Share on other sites More sharing options...
flop Posted January 25, 2008 Report Share Posted January 25, 2008 Good luck Ernie - I hope you get some helpful answers about your condition and you might even find that she has other research patients with similar problems.All the best,Flop Quote Link to comment Share on other sites More sharing options...
corina Posted January 25, 2008 Report Share Posted January 25, 2008 ernie,congratulations. you really are a special person, as i know you as a person with so much perseverance. i really admire that in you.i do hope this research will give you some answers on the muscle weakness and the paralysis. at least you've found someone willing to take your case, that is a huge step forward. so congratulations on the new neuro AND on all the hard work to find her!!!love,corina Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted January 25, 2008 Report Share Posted January 25, 2008 Congrats, Ernie! I hope it goes well and she finds a way to help you out a bit.Also, thanks for taking part in research! I really appreciate people who are willing to do that. Amy Quote Link to comment Share on other sites More sharing options...
Maxine Posted January 25, 2008 Report Share Posted January 25, 2008 Good for you Ernie!I hope that you get more help for your symptoms through this study, that would be a bonus---- We have to drive 10 miles too for a study I'll be in at NIH in Baltimore MD. for EDS. When do you go Ernie, and where is the study?I'm so happy for you---------safe travels for you dear.HUGS,Maxine :0) Quote Link to comment Share on other sites More sharing options...
morgan617 Posted January 25, 2008 Report Share Posted January 25, 2008 High hopes for this journey Ernie! I know you have gone through so much, and many trying times. I will pray she will be able to help you! morgan Quote Link to comment Share on other sites More sharing options...
Megan Posted January 25, 2008 Report Share Posted January 25, 2008 Good Luck!Meg Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted January 25, 2008 Report Share Posted January 25, 2008 good luck on the trip and with the doctor. Quote Link to comment Share on other sites More sharing options...
sally Posted January 25, 2008 Report Share Posted January 25, 2008 Good luck to you. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 25, 2008 Report Share Posted January 25, 2008 Congratulations! I hope that you get great information and relief after testing etc. with this specialist! Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 26, 2008 Author Report Share Posted January 26, 2008 Hi,This study is done in Canada for a change! I will seeing her at the end of March.Good luck with your visit at NIH Maxine.Thanks everyone for being so happy for me.I will keep you posted on my visit. Quote Link to comment Share on other sites More sharing options...
lalalisa Posted January 27, 2008 Report Share Posted January 27, 2008 Ernie,Thanks for sharing this good news! I hope and pray that you have a smooth trip and that most of all the research/tests will be able to bring you improvement. Thanks for letting us know and we look forward to hearing about your trip/experience.Take care,Lisa Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 3, 2008 Author Report Share Posted April 3, 2008 ... Quote Link to comment Share on other sites More sharing options...
jazzyfizzle Posted April 3, 2008 Report Share Posted April 3, 2008 Best wishes!Sher Quote Link to comment Share on other sites More sharing options...
ellen Posted April 6, 2008 Report Share Posted April 6, 2008 Ernie, have you had your test yet, (or did I miss it)? we're hoping you got some positive results. Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 6, 2008 Author Report Share Posted April 6, 2008 Hi,I posted the result of my visit and left it on for 2-3 days and only one person answered. I deleted my post since I felt that nobody was interested. I won't post it again because it seems that few people care. Quote Link to comment Share on other sites More sharing options...
Resting Posted April 6, 2008 Report Share Posted April 6, 2008 Sorry to see this, Ernie. It is always frustrating to me when I post somewhere and don't get any responses. I hope that you have a great day.CindyP.S. I haven't been on this site long, but from what I've seen I think you're a great encourager of the other folks here and I appreciate that. Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 7, 2008 Author Report Share Posted April 7, 2008 Hi Cindy,Thanks for your understanding and your encouragement. Quote Link to comment Share on other sites More sharing options...
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