Ernie Posted April 5, 2005 Report Share Posted April 5, 2005 Hi everyone,For those of you following my story you remember that 6 months ago I was put on a waiting list to go for testing with a neuro-muscular disorder researcher specialist. I've just got the phone call this afternoon and I have to be there tomorrow morning. It's a 3 hours drive. He specialises in rare disorders and he likes challenges. I hope he will like me!I will have multiple tests to find what is going wrong with my muscles.I am so excited but I wanted to take some time to share the good news with you.Can you believe that I got that excited going to the hospital? I would have never thought that when I was "healthy".Please send me good vibes!Thanks Ernie Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted April 5, 2005 Report Share Posted April 5, 2005 Ernie - Thats wonderful news! I dont think its odd to be happy about the hospital....It is the thing that might give you some answers.. Good Luck and I'll be thinking of you ! Quote Link to comment Share on other sites More sharing options...
blackwolf Posted April 5, 2005 Report Share Posted April 5, 2005 Best of luck and try to take it as easy as possible.blackwolf Quote Link to comment Share on other sites More sharing options...
briarrose Posted April 5, 2005 Report Share Posted April 5, 2005 ErnieThat is fantastic, especially for Canada if you know what I mean I would love to hear more please. Are they familiar with any of your, already, diagnosisis? What kids of tests do they do there? How long will you be in the hospital? What kind of degree does this doctor have? What kind of muscular disease do they think you might have or did they say? I know I'm missing some questions but that's a good start Steph Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 5, 2005 Report Share Posted April 5, 2005 Best of luck Ernie, you know you will be in all our thoughts!!! morgan Quote Link to comment Share on other sites More sharing options...
corina Posted April 5, 2005 Report Share Posted April 5, 2005 Hi Ernie,congratulations for being hospitalised . Hope this will finally give you some answers. Take care and let us know how it went!Corina Quote Link to comment Share on other sites More sharing options...
corina Posted April 5, 2005 Report Share Posted April 5, 2005 oh and Ernie, this specialist will absolutely LOVE you Corina Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 5, 2005 Author Report Share Posted April 5, 2005 Thansk everyone for the good wishes.I am glad you are there for me. Makes me feel more "in control" if you know what I mean.I am suppose to be there for 4-5 days. I will start some testing tomorrow and other tests will have to wait a few days because I have to be weaned from my meds and I cannot stop my meds at home because I am completely non functional without them.I have no idea what tests he will run as I asked him when I saw him in September and he told me that the hospital will decide.The reason my PCP referred me to him is that he specialises in rare muscle disorders in isolated areas of Quebec. Since my parents are blood related there is a high probably that I am stuck with another rare disorder!They think I might have some form of periodic paralysis or myotonia.This neurologist is a researcher and he rarely sees patients. He only takes difficult cases! I don't know if he knows about my other disorders but I told him that I faint and that I have an unstable BP. I only spent 15 minutes with him and he did not really take my medical history because he had already decided that he wanted to study me and would get a complete picture once I am there. I guess he is in for a surprise!He told me that my case is very complicated and cannot be diagnosed in 15 minutes. I said that this is the reason I see him because I heard that he likes challenges and that he is good at it. (His boss did Med school with my PCP 20 some years ago). This is the best hospital in Quebec for muscular disorders. People there have strange disorders (genetic recessive) because of the blood relationship of parents so doctors like to test their inhabitants because they learn a lot.Still so excited.Ernie Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted April 5, 2005 Report Share Posted April 5, 2005 KICK BUTT,. This is great. Sometimes things do fall into place, I'll be prayin tillI hear that you back. Here is your door opening, lets see how far.Blessings and a safe trip Miriam Quote Link to comment Share on other sites More sharing options...
DancingLight Posted April 5, 2005 Report Share Posted April 5, 2005 ernie....in the spirit of brevity:YEAH!!!!!!!!! hey, your post was pretty verbose today! okay, just teasing you! later alligator!emily Quote Link to comment Share on other sites More sharing options...
yogini Posted April 5, 2005 Report Share Posted April 5, 2005 I guess this is the call you've been waiting for. I'm so happy for you and hope you finally get some of the answers you deserve. Keep us posted and bonne chances (hope I spelled that right)!-Rita Quote Link to comment Share on other sites More sharing options...
geneva Posted April 6, 2005 Report Share Posted April 6, 2005 Ernie, I am really pleased for you. I hope you have someone to help you with the travel and pack your POTS bag!Take care. I wish you a very positive experience. Quote Link to comment Share on other sites More sharing options...
lindaf Posted April 6, 2005 Report Share Posted April 6, 2005 Ernie, Sure hope you get the answers tomorrow! Good luck and I'll say a prayer for you. Linda Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted April 6, 2005 Report Share Posted April 6, 2005 OH MY Goodness Ernie!! That's terrific news--refreshing to see some really great news tonight!I hope that they are able to find answers and a better way to treat what's going on with your body.Nina Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 6, 2005 Author Report Share Posted April 6, 2005 Thanks again all of you,Yes Rita, you spelled it right! It's the call I have been waiting for 6 months. Wow!I'll be thinking of you all.HugsErnie Quote Link to comment Share on other sites More sharing options...
Gena Posted April 6, 2005 Report Share Posted April 6, 2005 Ernie,I don't know if you'll read this in time before you go to the hospital, but I pray that you find some answers and treatments that will help your health improve. I'm very glad you're getting this opportunity. I hope it goes well for you. We'll all be keeping you in our thoughts while you're away. Best wishes on this journey! Gena Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 6, 2005 Report Share Posted April 6, 2005 Ernie! I'm so excited for this opportunity for you!I hope the days are packed with good information, medical information and a nurturing environment!Can't wait to hear all about it!Is your POTS travel bag ready?Stick this extra hug in from me for when you need some extra support!((((HUG)))) good journey my friend, tearose Quote Link to comment Share on other sites More sharing options...
DancingLight Posted April 9, 2005 Report Share Posted April 9, 2005 ernie,you are probably still at the l'hopital charming the specialist! but, i just was thinking about you and missing you on the site...after you curl up in your own bed and recuperate for a bit...let us know how it went...emily Quote Link to comment Share on other sites More sharing options...
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