Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 Trista~ You are doing such an awesome job trying to get the word out. Im sorry that you havent gotten much responses. I suppose that is no reason to give up. That letter is great, It explains it all. Keep it up, I will try to bug some of these people as well. Eventually they have to give in--right? Take care and have a pain-free weekend!! Love, **** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 lets write Oprah and see if she will let our whole group be on her show? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Maggie. Why are you apologizing? We all go through this. If you are tired or feeling ill, stuff happens. I can see this is really important to you, but you need to take care of you first. I see we have a lot in common, we are our own worst enemies and very hard on ourselves. Love, Normi Trista >Hey, girl! > >How are you today? > >I have probably let the ball drop. . . I never called the newspaper >lady back. I haven't bought the last two papers, but I know where I >can get copies to check and see if she did as she said she would as >soon as I feel better. I am not used to this fatigue all the time; I >am still taking on more than I am able to do without realizing it. I >am going to have to strike a balance where I can handle the few most >important things I need to do so I can do them well, and let the >unimportant things fall to the wayside. I say this, and I know it, >but I am reluctant to let some things go. > >Sorry if I let you down > >Love ya, > >Maggie > > > > " The LUPIES Store " Come check out our store... >http://www.cafepress.com/thelupies > > " The LUPIES Web Page " >http://www.itzarion.com/lupusgroup.html > > " The LUPIES online photo albums! " >Check out what your fellow Lupies look like... >http://www.picturetrail.com/gallery/view?username=lupies > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Maggie. Why are you apologizing? We all go through this. If you are tired or feeling ill, stuff happens. I can see this is really important to you, but you need to take care of you first. I see we have a lot in common, we are our own worst enemies and very hard on ourselves. Love, Normi Trista >Hey, girl! > >How are you today? > >I have probably let the ball drop. . . I never called the newspaper >lady back. I haven't bought the last two papers, but I know where I >can get copies to check and see if she did as she said she would as >soon as I feel better. I am not used to this fatigue all the time; I >am still taking on more than I am able to do without realizing it. I >am going to have to strike a balance where I can handle the few most >important things I need to do so I can do them well, and let the >unimportant things fall to the wayside. I say this, and I know it, >but I am reluctant to let some things go. > >Sorry if I let you down > >Love ya, > >Maggie > > > > " The LUPIES Store " Come check out our store... >http://www.cafepress.com/thelupies > > " The LUPIES Web Page " >http://www.itzarion.com/lupusgroup.html > > " The LUPIES online photo albums! " >Check out what your fellow Lupies look like... >http://www.picturetrail.com/gallery/view?username=lupies > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Love to you, Trista; I surely do wish that I could CLONE a decent neurologist for you--I am convinced! Love, n ! HI EVERYONE HI,MY NAME IS CASSY,AND I AM 25 YRS. OLD.I HAVE BEEN SICK FOR 3YRS.,BUT THIS PAST YEAR I HAVE BECOME DISABLED.I MAY HAVE MS,IHAVE HAD 2 BRAIN MRI'S THAT WERE NORMAL,SO NOW THEY ARE GOING TOLOOK AT MY SPINE.I AM VERY SICK,AND WOULD LOVE TOO TALK TO ANYONE WHO WOULD LIKE TOO SHARE INFO.. ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Thank you n. hugs, Trista ! HI EVERYONE HI,MY NAME IS CASSY,AND I AM 25 YRS. OLD.I HAVE BEEN SICK FOR 3YRS.,BUT THIS PAST YEAR I HAVE BECOME DISABLED.I MAY HAVE MS,IHAVE HAD 2 BRAIN MRI'S THAT WERE NORMAL,SO NOW THEY ARE GOING TOLOOK AT MY SPINE.I AM VERY SICK,AND WOULD LOVE TOO TALK TO ANYONE WHO WOULD LIKE TOO SHARE INFO.. ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 {{{{{{{{Trista}}}}}}}} I so understand this. Here's to hoping your next MRIs show lesions! LOL, but really. wrote: Cassy, yeah, some Dr.s are real winners huh? I think I'm scared to have my Dr. order the spine MRI, because what if it's neg too? Then what? I KNOW these sx's are real. I am more afraid of the MRI being neg than showing lesions, because then I won't know where to go from here. In fact I EXPECT it to be neg, because it seems to be my luck. Then, the doctors will really think I'm crazy. My OB/GYN gave me a script for a cane several months ago. Somedays I need it, somedays not. When I feel so weak that I can't walk, I just don't go anywhere. I refuse to use the scooters at the stores. I know I'm hardheaded. I've gotta get my kids ready. I only slept 5 hrs last night, so there's no way I'm going to make it today without a nap. Take care, Trista ! HI EVERYONE HI,MY NAME IS CASSY,AND I AM 25 YRS. OLD.I HAVE BEEN SICK FOR 3YRS.,BUT THIS PAST YEAR I HAVE BECOME DISABLED.I MAY HAVE MS,IHAVE HAD 2 BRAIN MRI'S THAT WERE NORMAL,SO NOW THEY ARE GOING TOLOOK AT MY SPINE.I AM VERY SICK,AND WOULD LOVE TOO TALK TO ANYONE WHO WOULD LIKE TOO SHARE INFO.. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Challis, you are the only people here that really understand when I say that. I'm in tears. People look at me like I'm a freak and say, "You want it to show lesions???~!!!" They don't understand what it's like, not having answers. I think once I finally get a name for this illness, I will finally feel validated. They will finally know it's real. Trista ! HI EVERYONE HI,MY NAME IS CASSY,AND I AM 25 YRS. OLD.I HAVE BEEN SICK FOR 3YRS.,BUT THIS PAST YEAR I HAVE BECOME DISABLED.I MAY HAVE MS,IHAVE HAD 2 BRAIN MRI'S THAT WERE NORMAL,SO NOW THEY ARE GOING TOLOOK AT MY SPINE.I AM VERY SICK,AND WOULD LOVE TOO TALK TO ANYONE WHO WOULD LIKE TOO SHARE INFO.. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Yup and see, that makes perfect sense. Who was it here onlist who's Neuro said something along the lines of them wanting it to be MS?? Was that you or someone else? Wanting answers is all it is. Something to show we're not crazy or needing attention, so bored we create problems which leaves us unable to enjoy life as we once wanted to. HUGS, Challis Trista wrote: Challis, you are the only people here that really understand when I say that. I'm in tears. People look at me like I'm a freak and say, "You want it to show lesions???~!!!" They don't understand what it's like, not having answers. I think once I finally get a name for this illness, I will finally feel validated. They will finally know it's real. Trista ! HI EVERYONE HI,MY NAME IS CASSY,AND I AM 25 YRS. OLD.I HAVE BEEN SICK FOR 3YRS.,BUT THIS PAST YEAR I HAVE BECOME DISABLED.I MAY HAVE MS,IHAVE HAD 2 BRAIN MRI'S THAT WERE NORMAL,SO NOW THEY ARE GOING TOLOOK AT MY SPINE.I AM VERY SICK,AND WOULD LOVE TOO TALK TO ANYONE WHO WOULD LIKE TOO SHARE INFO.. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 I understand as well because I have had 3 MRI's in the past 4yrs & haven't seen visible lesions yet. I'm full of Sx though & have been on IV steroids 3x. So they did a cervical spine MRI too & they couldn't see anything. I've had ON 3x hence the steroids. I had to go through 3 Neuros before I found one that would commit to the Dx. I was on Copaxone for a year & I quit after that. Sometimes I wish there would just be a huge obvious lesion so that there would be no doubt. E. Colorado --- Trista wrote: > Challis, you are the only people here that really > understand when I say that. I'm in tears. People > look at me like I'm a freak and say, " You want it to > show lesions???~!!! " They don't understand what > it's like, not having answers. I think once I > finally get a name for this illness, I will finally > feel validated. They will finally know it's real. > Trista > Re: [MSersLif e]Cassyy > > > That's me Trista...I self cath from 3 to > every time I go to the bathroom. And it's all in my > head. > > ' > > Still on my dr's suck kick. > > Trista wrote: > Cassy, > > I'm glad you seem to be getting > closer to a dx. I hope I get one soon too. It will > be validation, you know? I feel like I have to have > a name for this, because it has changed my life so > much and limited what I can do. It isn't all bad > though. I truly believe that there are lessons for > us, in every experience and circumstance we have. > It isn't always roses, but we always learn from our > experiences. This has made me more humble and less > prideful. It has made me depend on others, when I > need help. It used to KILL me to need help or ask > for help from others. I have always been " the > mother " . My life has always been filled with people > that needed me to be strong. My DH is such a help > and support to me. He can tell with one look at me, > or hear it in my voice on the phone, that I'm not > well. He then jumps in and helps with anything that > needs doing. I am so blessed to have him. My > oldest son is 13, and he has Asperger's Syndrome. > He is a huge help to me. I never realize how much I > ask of him around here, until he's sick, or gone for > a day. He hates it that I'm sick all the time, and > is always worried about me. I love that and hate > that. I don't want him to worry over me. Your > daughters will learn in time, that some days you can > do more than other days. I think it's harder on us > than them, because we want to do so much that we > can't. Kids are incredibly resilient. > To answer your question, no I have > not had a spinal MRI. My GP ordered the one of the > brain, and I took it to the Neuro last May, who blew > me off. Basically, he said that he could order more > tests, but it would be a waste of time. Grrrrr. > I'm considering having my GP order the tests. I'm > not going back to that Neuro, unless I have some > huge problem, or an MRI that shows lesions. It > becomes depressing when ! you have no answers and > doctors think that it's psychogenic. I saw a Dr. > last month that said my bladder trouble is > neurogenic, so we'll see if that leads to anything. > I just can't understand Dr.s that think this is all > in our head. Who the heck would self cath if they > didn't have to? Good lord. I do not self cath > myself, but know of others w/out dx that have to. > But...... it's all in their heads. > My current sx's are aching pain in my > shoulders and down my arms, aching legs and feet, > that sometimes feel like they are in a vice. I also > get random and assorted shooting pains in different > parts. Muscle spasms that at the longest, went on > for 2 hours, which left me with deep burning pain in > that arm the next day. I get deep muscle burning, > but also get a skin burning sensation. The > numbness, tingling and vibration sensations & nb! sp; > happen daily. My fatigue is so debilitating right > now, and weakness, like I'm not sure if my legs will > carry me. The fatigue changes in severity. > Sometimes I feel energetic, then try to cram > everything into one day, then end up paying for it, > because I overdid it. I never learn. lol. Those > things are going on now, along with bladder trouble > and === message truncated === " Insanity runs in my family. It practically gallops. " Cary Grant __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 I feel validated here, everytime someone shares a story like yours. Thank you! Trista Re: [MSersLif e]Cassyy> > > That's me Trista...I self cath from 3 to> every time I go to the bathroom. And it's all in my> head.> > '> > Still on my dr's suck kick.> > Trista <tabeloecharter (DOT) net> wrote:> Cassy,> > I'm glad you seem to be getting> closer to a dx. I hope I get one soon too. It will> be validation, you know? I feel like I have to have> a name for this, because it has changed my life so> much and limited what I can do. It isn't all bad> though. I truly believe that there are lessons for> us, in every experience and circumstance we have. > It isn't always roses, but we always learn from our> experiences. This has made me more humble and less> prideful. It has made me depend on others, when I> need help. It used to KILL me to need help or ask> for help from others. I have always been "the> mother". My life has always been filled with people> that needed me to be strong. My DH is such a help> and support to me. He can tell with one look at me,> or hear it in my voice on the phone, that I'm not> well. He then jumps in and helps with anything that> needs doing. I am so blessed to have him. My> oldest son is 13, and he has Asperger's Syndrome. > He is a huge help to me. I never realize how much I> ask of him around here, until he's sick, or gone for> a day. He hates it that I'm sick all the time, and> is always worried about me. I love that and hate> that. I don't want him to worry over me. Your> daughters will learn in time, that some days you can> do more than other days. I think it's harder on us> than them, because we want to do so much that we> can't. Kids are incredibly resilient.> To answer your question, no I have> not had a spinal MRI. My GP ordered the one of the> brain, and I took it to the Neuro last May, who blew> me off. Basically, he said that he could order more> tests, but it would be a waste of time. Grrrrr. > I'm considering having my GP order the tests. I'm> not going back to that Neuro, unless I have some> huge problem, or an MRI that shows lesions. It> becomes depressing when ! you have no answers and> doctors think that it's psychogenic. I saw a Dr.> last month that said my bladder trouble is> neurogenic, so we'll see if that leads to anything. > I just can't understand Dr.s that think this is all> in our head. Who the heck would self cath if they> didn't have to? Good lord. I do not self cath> myself, but know of others w/out dx that have to. > But...... it's all in their heads. > My current sx's are aching pain in my> shoulders and down my arms, aching legs and feet,> that sometimes feel like they are in a vice. I also> get random and assorted shooting pains in different> parts. Muscle spasms that at the longest, went on> for 2 hours, which left me with deep burning pain in> that arm the next day. I get deep muscle burning,> but also get a skin burning sensation. The> numbness, tingling and vibration sensations & nb! sp;> happen daily. My fatigue is so debilitating right> now, and weakness, like I'm not sure if my legs will> carry me. The fatigue changes in severity. > Sometimes I feel energetic, then try to cram> everything into one day, then end up paying for it,> because I overdid it. I never learn. lol. Those> things are going on now, along with bladder trouble> and === message truncated ==="Insanity runs in my family. It practically gallops."Cary Grant__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 My nutjob told me that. Idiot. I'm just hoping that I can further my suffering and have to self cath for no reason soon! (rolling my eyes) T. ! HI EVERYONE HI,MY NAME IS CASSY,AND I AM 25 YRS. OLD.I HAVE BEEN SICK FOR 3YRS.,BUT THIS PAST YEAR I HAVE BECOME DISABLED.I MAY HAVE MS,IHAVE HAD 2 BRAIN MRI'S THAT WERE NORMAL,SO NOW THEY ARE GOING TOLOOK AT MY SPINE.I AM VERY SICK,AND WOULD LOVE TOO TALK TO ANYONE WHO WOULD LIKE TOO SHARE INFO.. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 I had bad symptoms for 4 years and no lesions showing up on an MRI. I finally had a BIG episode and 1 lesion showed up. My current neuro thinks she sees where I had 9 previous lesions. I only have 1 active lesion for 4 years now. This disease likes to play hide and go seek I think. ShirleyTrista wrote: I feel validated here, everytime someone shares a story like yours. Thank you! Trista Re: [MSersLif e]Cassyy> > > That's me Trista...I self cath from 3 to> every time I go to the bathroom. And it's all in my> head.> > '> > Still on my dr's suck kick.> > Trista <tabeloecharter (DOT) net> wrote:> Cassy,> > I'm glad you seem to be getting> closer to a dx. I hope I get one soon too. It will> be validation, you know? I feel like I have to have> a name for this, because it has changed my life so> much and limited what I can do. It isn't all bad> though. I truly believe that there are lessons for> us, in every experience and circumstance we have. > It isn't always roses, but we always learn from our> experiences. This has made me more humble and less> prideful. It has made me depend on others, when I> need help. It used to KILL me to need help or ask> for help from others. I have always been "the> mother". My life has always been filled with people> that needed me to be strong. My DH is such a help> and support to me. He can tell with one look at me,> or hear it in my voice on the phone, that I'm not> well. He then jumps in and helps with anything that> needs doing. I am so blessed to have him. My> oldest son is 13, and he has Asperger's Syndrome. > He is a huge help to me. I never realize how much I> ask of him around here, until he's sick, or gone for> a day. He hates it that I'm sick all the time, and> is always worried about me. I love that and hate> that. I don't want him to worry over me. Your> daughters will learn in time, that some days you can> do more than other days. I think it's harder on us> than them, because we want to do so much that we> can't. Kids are incredibly resilient.> To answer your question, no I have> not had a spinal MRI. My GP ordered the one of the> brain, and I took it to the Neuro last May, who blew> me off. Basically, he said that he could order more> tests, but it would be a waste of time. Grrrrr. > I'm considering having my GP order the tests. I'm> not going back to that Neuro, unless I have some> huge problem, or an MRI that shows lesions. It> becomes depressing when ! you have no answers and> doctors think that it's psychogenic. I saw a Dr.> last month that said my bladder trouble is> neurogenic, so we'll see if that leads to anything. > I just can't understand Dr.s that think this is all> in our head. Who the heck would self cath if they> didn't have to? Good lord. I do not self cath> myself, but know of others w/out dx that have to. > But...... it's all in their heads. > My current sx's are aching pain in my> shoulders and down my arms, aching legs and feet,> that sometimes feel like they are in a vice. I also> get random and assorted shooting pains in different> parts. Muscle spasms that at the longest, went on> for 2 hours, which left me with deep burning pain in> that arm the next day. I get deep muscle burning,> but also get a skin burning sensation. The> numbness, tingling and vibration sensations & nb! sp;> happen daily. My fatigue is so debilitating right> now, and weakness, like I'm not sure if my legs will> carry me. The fatigue changes in severity. > Sometimes I feel energetic, then try to cram> everything into one day, then end up paying for it,> because I overdid it. I never learn. lol. Those> things are going on now, along with bladder trouble> and === message truncated ==="Insanity runs in my family. It practically gallops."Cary Grant__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Thanks for sharing that. It seems like they need to come up with new criteria for diagnosis to me. My sx's come and go, and as sure as anything, I'll pass the Neuro exam, because I'm feeling better by the time I'm seen. Why is that? Here at home, I try to walk and drift off to one side or the other, but the Dr. never seems to see anything out of the ordinary. Go figure. Trista Re: [MSersLif e]Cassyy> > > That's me Trista...I self cath from 3 to> every time I go to the bathroom. And it's all in my> head.> > '> > Still on my dr's suck kick.> > Trista <tabeloecharter (DOT) net> wrote:> Cassy,> > I'm glad you seem to be getting> closer to a dx. I hope I get one soon too. It will> be validation, you know? I feel like I have to have> a name for this, because it has changed my life so> much and limited what I can do. It isn't all bad> though. I truly believe that there are lessons for> us, in every experience and circumstance we have. > It isn't always roses, but we always learn from our> experiences. This has made me more humble and less> prideful. It has made me depend on others, when I> need help. It used to KILL me to need help or ask> for help from others. I have always been "the> mother". My life has always been filled with people> that needed me to be strong. My DH is such a help> and support to me. He can tell with one look at me,> or hear it in my voice on the phone, that I'm not> well. He then jumps in and helps with anything that> needs doing. I am so blessed to have him. My> oldest son is 13, and he has Asperger's Syndrome. > He is a huge help to me. I never realize how much I> ask of him around here, until he's sick, or gone for> a day. He hates it that I'm sick all the time, and> is always worried about me. I love that and hate> that. I don't want him to worry over me. Your> daughters will learn in time, that some days you can> do more than other days. I think it's harder on us> than them, because we want to do so much that we> can't. Kids are incredibly resilient.> To answer your question, no I have> not had a spinal MRI. My GP ordered the one of the> brain, and I took it to the Neuro last May, who blew> me off. Basically, he said that he could order more> tests, but it would be a waste of time. Grrrrr. > I'm considering having my GP order the tests. I'm> not going back to that Neuro, unless I have some> huge problem, or an MRI that shows lesions. It> becomes depressing when ! you have no answers and> doctors think that it's psychogenic. I saw a Dr.> last month that said my bladder trouble is> neurogenic, so we'll see if that leads to anything. > I just can't understand Dr.s that think this is all> in our head. Who the heck would self cath if they> didn't have to? Good lord. I do not self cath> myself, but know of others w/out dx that have to. > But...... it's all in their heads. > My current sx's are aching pain in my> shoulders and down my arms, aching legs and feet,> that sometimes feel like they are in a vice. I also> get random and assorted shooting pains in different> parts. Muscle spasms that at the longest, went on> for 2 hours, which left me with deep burning pain in> that arm the next day. I get deep muscle burning,> but also get a skin burning sensation. The> numbness, tingling and vibration sensations & nb! sp;> happen daily. My fatigue is so debilitating right> now, and weakness, like I'm not sure if my legs will> carry me. The fatigue changes in severity. > Sometimes I feel energetic, then try to cram> everything into one day, then end up paying for it,> because I overdid it. I never learn. lol. Those> things are going on now, along with bladder trouble> and === message truncated ==="Insanity runs in my family. It practically gallops."Cary Grant__________________________________________________ Quote Link to comment Share on other sites More sharing options...
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