Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Rita, I live in Kingston New York...It is about 2 hours north of New York City and one hour south of Albany. Kingston was the first capitol of New York. Kisses to Gladi too Cookie > Cookie that was sweet, thank you. I still wonder where you live in NY. > > Rita > > Luv & Hugs! > > > > > ************************************* > Some people succeed in spite of their handicap. Others succeed because > of them. > > > Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth > > > > When you worry it's like sitting in a rocking chair, it gives you a good > ride, but it doesn't get you any where. > ************************************* > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Thanks, I was born in Albany, and still have family and friend there. It is only a three hour drive from where I live, maybe this spring or summer we might hookup, what do you think? Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Rita, How cool that would be. I would just love the opportunity. I went to the neuro today. He said the reason I had so much trouble with the spinal tap is because he has to take extra fluid to do lots of tests. They all came back negative, so I guess that supports his PLS diagnosis. I went to the Synapse page and they are looking for people with PLS to do research. I called and they said I pre qualify. It is out of Bethesda land. Have any of you gone this route? My neuro was all for it and said he will fill out the necessary papers to get it rolling. One thing I know is I will not have another tap!!! My neuro wants me to go back to Mr. Siani Hospital in NYC to follow up one more time with the specialist there. Trying to see if my insurance will cover it. I am on 2000 units of vitamin C, 1200 units of vitamin E, 15 of Beta Carotene and 200 mg. of celebrex twice a day. Does anyone else have this routine? I have facicultions in my legs and when I relax I get " zingers " anywhere in my body. They are a strong " twitch " that happens once in any given spot. Is that the spacicity they talk about? All my reflexes are hyper, up to my neck. Whatever that means. Thanks for listening, the help, encouragement and advice. Cookie > Thanks, I was born in Albany, and still have family and friend there. > It is only a three hour drive from where I live, maybe this spring or > summer we might hookup, what do you think? > > Rita > > Luv & Hugs! > > > > > ************************************* > Some people succeed in spite of their handicap. Others succeed because > of them. > > > Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth > > > > When you worry it's like sitting in a rocking chair, it gives you a good > ride, but it doesn't get you any where. > ************************************* > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 COOKIE I AM SO HAPPY THAT YOUR DX. STAYED PLS. THE BIG MONSTER IS ALS. I WOULDN'T WISH ANY OF THESE ON ANYONE BUT ESPECIALLY ALS. LOVE AND BEST WISHES BONNIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Cookie: I went to Bethesda MD a few years ago, as many other's have done. It was a great experience, but it was research being done on PLS. With me it just reconfirmed my DX and they did not call me back a second time because they were looking for newly diagnosed people, not an old timers like me. They pay for everything, air fare, food etc... up to a certain amount of $$$. We had to kick in a few bucks for food and lodging not too much if I remember. Plus I met Jane Anne and her husband, so it was worth the extra money. I can't understand once a dx of PLS is made, why some neurologist (like yours) keeps sending you here and there for more test unless they feel you might not have PLS. I only see mine once a year and he records my condition and says " see you next year " . I have too many other things going on in my life to spend all this energy going back and forth too doctors (I would rather go to the beach for a lobster). But some people enjoy going to doctor's, not me I have had enough of them to last a lifetime. I am serious about meeting you this spring or summer. Me & Gladi (if the price of gas comes down a little) will venture off to Albany. So lets work on that. Till Next time! Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2003 Report Share Posted February 6, 2003 Vivian: Where or what is Berkeley Springs? Would it or could it be a place for a get together? Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 Vivian: I should have remembered that, I have seen it enough times. I hope you have a wonderful time, and knowing Ronnie you will. I was fortunate enough to meet her in CT of 2000. My husband and her were very close???? No I won't be able to go, poor timing. Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 Rita, I hope Gladi's doctor doesn't charge what our neuros do!!! Hope she is not in for any diagnostic tests and doesn't have to spend the night. Let us know. Cookie Quote Link to comment Share on other sites More sharing options...
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