Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Hi , If the truth be known I was a lurker for awhile too. I don't know why it took me so long to jump in, but I am glad I did. I guess that I am only writing to tell you that I am on Rebif too. I am not certain as too how long I will continue on it due to some medication changes. All told, it really isn't too bad. It has its pros and cons. Its only 3 times a week, there is none of the burning and stinging after the initial injection like there is with Copaxone. On the bad side is the "flu nasties" the next day. They tend to taper off though. I am sorry that you have this diagnosis, but "I" think you are in the right place at the right time. Welcome kr14623 wrote: Dear Groupies - After lurking and reading about all of you for over a month now, please allow me to introduce myself.It all started with double vision and some right-side numbness the last week of June, and ended with a definite diagnosis on July 26. Of course that was after a CAT scan, MRI, spinal tap, 2 courses of IV sterioids, etc. I have awesome doctors here in Buffalo (the hot-bed of MS, I am told.) I am to start on Rebif next Tuesday. I hate needles, but after all of the other procedures, I think I can handle it.My current 'condition' is some numbness in my lower legs, a very numb 'band' above my right knee, and some slighty blurred vision. Every morning is a new 'inventory' of feelings. Some days the legs feel pretty good, and the tops of my forearms are numb. Other days the back of my head feels numb. It's interesting to see what each new day will bring. :)This group has been a Godsend. When I was confused, your messages helped clear the fog. When I was scared, you calmed me down. When I was sad, you made me laugh (you are a funny bunch!) You are my sanity in this very insane process, and I thank you all for that.I'll go back to lurking now. I may ask a bunch of questions after I start the Rebif. For those that are newly diagnosed or pre-diagnosis, please feel free to ask the group about all of the crazy emotions you are feeling right now. They certainly helped to 'talk me down' from all of the anxiety I was having.Thanks again for having me be a part of your wonderful group.42 Buffalo__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Oh PLEASE don't go back to lurking! I enjoyed reading your post and I'm sure everyone else did too. We will want to know how the Rebif goes for you. Is home health coming out to your house to teach you to do Rebif? When I started Avonex that's the way it worked. I was scared to death! But it wasn't bad after all and I survived it. lol MS is interesting and you never get bored. There's something new ever day. I liked the way you described it--a daily "inventory". Sharon (MSersLife creator/owner) “One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow hugekr14623 wrote: Dear Groupies - After lurking and reading about all of you for over a month now, please allow me to introduce myself.It all started with double vision and some right-side numbness the last week of June, and ended with a definite diagnosis on July 26. Of course that was after a CAT scan, MRI, spinal tap, 2 courses of IV sterioids, etc. I have awesome doctors here in Buffalo (the hot-bed of MS, I am told.) I am to start on Rebif next Tuesday. I hate needles, but after all of the other procedures, I think I can handle it.My current 'condition' is some numbness in my lower legs, a very numb 'band' above my right knee, and some slighty blurred vision. Every morning is a new 'inventory' of feelings. Some days the legs feel pretty good, and the tops of my forearms are numb. Other days the back of my head feels numb. It's interesting to see what each new day will bring. :)This group has been a Godsend. When I was confused, your messages helped clear the fog. When I was scared, you calmed me down. When I was sad, you made me laugh (you are a funny bunch!) You are my sanity in this very insane process, and I thank you all for that.I'll go back to lurking now. I may ask a bunch of questions after I start the Rebif. For those that are newly diagnosed or pre-diagnosis, please feel free to ask the group about all of the crazy emotions you are feeling right now. They certainly helped to 'talk me down' from all of the anxiety I was having.Thanks again for having me be a part of your wonderful group.42 Buffalo Sharon (MSersLife creator/owner) “One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge Start your day with Yahoo! - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Hi KAREN Welcome to the group and sorry you had to get MS to meet us. I am having trouble with double vision right now and I am almost sure the warm days here in Indiana is causing it. I will give it a few weeks to see if it will go away before I do anything about it. I have had times when I was new to this MS I would rush to the doctor when I had a pop up problem happen and usually I end up having to wait a few days to see him because of his busy schedule and then because I waited the day I do get in sometimes the problem I was going to see him about was almost cleared up. I hope that makes sense. I do plan to stop driving until my vision is better. I have no trouble seeing sitting here at my monitor it is when I have to turn my head to look at something my eyes don't track well on something I turn my head to look at. I hope you make some new friends in this group. I don't get away from home very often so this is a way I can still socialize with people. Bill About Me Introduction Dear Groupies - After lurking and reading about all of you for over a month now, please allow me to introduce myself.It all started with double vision and some right-side numbness the last week of June, and ended with a definite diagnosis on July 26. Of course that was after a CAT scan, MRI, spinal tap, 2 courses of IV sterioids, etc. I have awesome doctors here in Buffalo (the hot-bed of MS, I am told.) I am to start on Rebif next Tuesday. I hate needles, but after all of the other procedures, I think I can handle it.My current 'condition' is some numbness in my lower legs, a very numb 'band' above my right knee, and some slighty blurred vision. Every morning is a new 'inventory' of feelings. Some days the legs feel pretty good, and the tops of my forearms are numb. Other days the back of my head feels numb. It's interesting to see what each new day will bring. :)This group has been a Godsend. When I was confused, your messages helped clear the fog. When I was scared, you calmed me down. When I was sad, you made me laugh (you are a funny bunch!) You are my sanity in this very insane process, and I thank you all for that.I'll go back to lurking now. I may ask a bunch of questions after I start the Rebif. For those that are newly diagnosed or pre-diagnosis, please feel free to ask the group about all of the crazy emotions you are feeling right now. They certainly helped to 'talk me down' from all of the anxiety I was having.Thanks again for having me be a part of your wonderful group.42 Buffalo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Hi . I'm kinda a lurker too. I "de-lurk" from time to time. LOL. Just wanted to say hi and welcome. I'm a newbie of a few months. No dx yet. I'm scheduled to have my baby by c-section Friday the 12th, so I'll go back into lurk mode now. LOL. Trista kr14623 wrote: Dear Groupies - After lurking and reading about all of you for over a month now, please allow me to introduce myself.It all started with double vision and some right-side numbness the last week of June, and ended with a definite diagnosis on July 26. Of course that was after a CAT scan, MRI, spinal tap, 2 courses of IV sterioids, etc. I have awesome doctors here in Buffalo (the hot-bed of MS, I am told.) I am to start on Rebif next Tuesday. I hate needles, but after all of the other procedures, I think I can handle it.My current 'condition' is some numbness in my lower legs, a very numb 'band' above my right knee, and some slighty blurred vision. Every morning is a new 'inventory' of feelings. Some days the legs feel pretty good, and the tops of my forearms are numb. Other days the back of my head feels numb. It's interesting to see what each new day will bring. :)This group has been a Godsend. When I was confused, your messages helped clear the fog. When I was scared, you calmed me down. When I was sad, you made me laugh (you are a funny bunch!) You are my sanity in this very insane process, and I thank you all for that.I'll go back to lurking now. I may ask a bunch of questions after I start the Rebif. For those that are newly diagnosed or pre-diagnosis, please feel free to ask the group about all of the crazy emotions you are feeling right now. They certainly helped to 'talk me down' from all of the anxiety I was having.Thanks again for having me be a part of your wonderful group.42 Buffalo Sharon (MSersLife creator/owner) “One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge Start your day with Yahoo! - make it your home page Start your day with Yahoo! - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Hi Welcome I'm new to this particular group myself. It is nice to have a place to talk about our feelings, no matter what they are. I was diagnosed in 1995. Heat does bother me, it will affect my eyesight and once I cool down my vision will return. On other sights, I was a member for years on another screen name and I lurked all the time. I'm coming out of my lurkiness, LOL Darlene www.canecovers.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 ME??? A "heck of a woman", huh? LOL.. Well thank you honey... I think that you are a heck of a woman too. Did you know that??? Sharon (MSersLife creator/owner) “One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge WeavinnRaftin@... wrote: What a lovely intro! ) , it's nice to meet you! I've been to your little (lol) town before. When I lived up in Watertown and Fort Drum I got to visit the Buffalo area often. Mostly ville, Tonawanda, Amherst, etc. And, of course, "The Falls". LOL Had my first curly fries with vinegar in Lockport. lol I went to a Fourth of July fireworks display at a park up there... not sure of the name now. Oak something? Anyway, it was just awesome!! Loved how they did it. ) I hope everything goes great with the Rebif. I remember when my Mother was to start Avonex and was scheduled for someone to come out and "teach" her how to do it. She was not looking forward to it. I was supposed to be there when the appointment finally came, but Mom pulled out that old independent indignation and did herself... then told me about it later. She's a heck of a woman, ya know. ) Good *luck*!! Hope we get to see more of you around here. ) Challis Dear Groupies - After lurking and reading about all of you for over a month now, please allow me to introduce myself.It all started with double vision and some right-side numbness the last week of June, and ended with a definite diagnosis on July 26. Of course that was after a CAT scan, MRI, spinal tap, 2 courses of IV sterioids, etc. I have awesome doctors here in Buffalo (the hot-bed of MS, I am told.) I am to start on Rebif next Tuesday. I hate needles, but after all of the other procedures, I think I can handle it.My current 'condition' is some numbness in my lower legs, a very numb 'band' above my right knee, and some slighty blurred vision. Every morning is a new 'inventory' of feelings. Some days the legs feel pretty good, and the tops of my forearms are numb. Other days the back of my head feels numb. It's interesting to see what each new day will bring. :)This group has been a Godsend. When I was confused, your messages helped clear the fog. When I was scared, you calmed me down. When I was sad, you made me laugh (you are a funny bunch!) You are my sanity in this very insane process, and I thank you all for that.I'll go back to lurking now. I may ask a bunch of questions after I start the Rebif. For those that are newly diagnosed or pre-diagnosis, please feel free to ask the group about all of the crazy emotions you are feeling right now. They certainly helped to 'talk me down' from all of the anxiety I was having.Thanks again for having me be a part of your wonderful group.42 Buffalo Sharon (MSersLife creator/owner) “One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 Hi i'm new here, i just wanted to tell you alittle about myself. I'm 26 years old with 4 kids and was dig.Nov '10 with Chiari and a syrinx. They tell me in was aquired because of a lumbar shunt i had placed in '09 for psuedotumor cerebri. my hernination is 12.6mm. I had the lp shunt tied off in jan and a vp shunt put in. I just seen the doc yesterday and he wants me to have a decompression so i'm looking at mid july for that. Thats pretty much a summery of the last couple years. I have bad headaches, neck pain, shoulder pain, my hands, feet,and legs tingle and go to " sleep " ALOT, there is spots in my back that its like the skin is numb. And of course my memory sucks like i have brain fog all the time. Its almost like my mind is gotten slower sometimes i wonder if thats not just all in my head, but i know i use to be a bright smart young lady and now when i'm reading i can really tell i have to read things slower and i misprounce words ALOT. If i dont write something down i forget,if i put something somewhere i forget.....Its nice to just have other people who know what your going through cause nobody else seems to really get it, my husband tries and is understanding most of the time but i can tell he gets frusterated too but he will never fully understand. Well everyone thanks for reading my story sorry its kinda long. Quote Link to comment Share on other sites More sharing options...
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