Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 Shirley, I had written you a long response and all of a sudden " Poof! " , it was gone to somewhere out in space. I'll try to remember what I said before but if I can't just remember that it's part of the BF that I have also. I'm so sorry that your MS has obviously flared so much in the past year. It's hard to believe that you've actually even had this diagnosis that long. I'm sure each and every flare gets more and more frightening...I have a friend in CA who has MS. Her son was good friends with my 30 year old son when they were in high school and she had been dx'd 10 years or so before that. Her MS would flare for a while and then go into remission, sometimes for several years. She's now in her 50's and her husband has gone through the bit where he can no longer care for her at home so they found a wonderful new care facility where all the patients have MS. Marta, being the organizer that she is, has done all sorts of things to liven up the place, plan outings, and work as a teacher mentor to those who had basically gotten so depressed about their plight but Marta has done wonders to help with the program. She said that since she was to the point where she needed someone to stay with her, why not go to this place during the week, and then on weekends, Dan and she have her at home still doing amazing things together. Marta remained mobile for a long time because her neuro prescribed an electric chair for her and she had a lift in her van so she could still get out and do her volunteer work with the kids schools. You are a long, long way from being as infirmed as Marta but I just wanted to tell you about her because even though she had several major flares at first after she was first dx'd, she had many months and years at a time when she was in remission. I hope that your new neuro will Rx a motorized chair for you. It will make it so much easier for you to get around and allow you and Steve to do lots more things together on weekends when you can get out and go. I am praying for you that the yearly checkup doesn't show much change. Please tell us how we can be of greater support to you if that is possible. We love you and know you have a fight on your hands to work with your dx and live the life you and Steve want to live. Hugs and many prayers, Jane > I've been in a MS flare starting slowly on Thursday. By Sunday, Steve > called the neuro on call. I was put on 80 mgs of prednisone on Sunday and > another 80 mgs today/Monday. I saw my new neuro today. I all ready had > this appt scheduled. It was my 1 year appt. I got a MRI done at 6:30 pm > Monday. We'll see if there's any new activity or what. This was my second > flare this month. That's not typical of my MS. My last shower was Saturday > morning and I got one Monday at 9 pm. Boy did it feel good. I didn't move > much this weekend. I went from one couch where I sat, to the other couch I > laid on and then to the bathroom. I was so weak I had to use my walker with > wheels. That wore me out too. but I'm not bad enough for a scooter > according to my last neuro....lol I guess I'm not bad enough long enough or > just enough I guess....lol When I'm that weak I couldn't contol a scooter > anyways. I get vertigo so bad I couldn't see where I was driving....lol So > the wheeled walker is best I guess. But I'm better, I can't sleep I'm > hyped! But I can walk under my own power at the moment. > I get caught up on the groups email and then I get behind again. arrgghhhh! > x0x0x0 > Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 Thanks Jane. Oh I really realize how lucky I am with my MS. I know it could be worse and I am thankful for that everyday. It's just been a year and the Avonex has probalbly just started working. Or we'll know if it has I guess...lol I'm glad Marta has such high spirit. I know I will get a regular w/c. And that's good. I won't be able to use it in the house. OUr house isn't ready for a w/c, like the doorframes. But if I'm having a flare I couldn't move a w/c on my own. So the wheeled walker is good for me now. When I need it. Most of the time you'd know nothing was wrong with me. I have been using a borrowed w/c for a year now. It's old and it doesn't push easily. We used it last year in MD and DC. I have no problem using it! We get to do more now. The cooling vest has helped too. Thanks, x0x0x0 Shirley -- Re: Shirley Shirley, I had written you a long response and all of a sudden"Poof!", it was gone to somewhere out in space. I'll try to rememberwhat I said before but if I can't just remember that it's part of theBF that I have also.I'm so sorry that your MS has obviously flared so much in the pastyear. It's hard to believe that you've actually even had thisdiagnosis that long. I'm sure each and every flare gets more and morefrightening...I have a friend in CA who has MS. Her son was goodfriends with my 30 year old son when they were in high school and shehad been dx'd 10 years or so before that. Her MS would flare for awhile and then go into remission, sometimes for several years. She'snow in her 50's and her husband has gone through the bit where he canno longer care for her at home so they found a wonderful new carefacility where all the patients have MS. Marta, being the organizerthat she is, has done all sorts of things to liven up the place, planoutings, and work as a teacher mentor to those who had basicallygotten so depressed about their plight but Marta has done wonders tohelp with the program. She said that since she was to the point whereshe needed someone to stay with her, why not go to this place duringthe week, and then on weekends, Dan and she have her at home stilldoing amazing things together. Marta remained mobile for a long timebecause her neuro prescribed an electric chair for her and she had alift in her van so she could still get out and do her volunteer workwith the kids schools. You are a long, long way from being as infirmed as Marta but I justwanted to tell you about her because even though she had several majorflares at first after she was first dx'd, she had many months andyears at a time when she was in remission. I hope that your new neurowill Rx a motorized chair for you. It will make it so much easier foryou to get around and allow you and Steve to do lots more thingstogether on weekends when you can get out and go. I am praying foryou that the yearly checkup doesn't show much change. Please tell ushow we can be of greater support to you if that is possible. We loveyou and know you have a fight on your hands to work with your dx andlive the life you and Steve want to live.Hugs and many prayers,Jane> I've been in a MS flare starting slowly on Thursday. By Sunday, Steve> called the neuro on call. I was put on 80 mgs of prednisone onSunday and> another 80 mgs today/Monday. I saw my new neuro today. I all ready had> this appt scheduled. It was my 1 year appt. I got a MRI done at6:30 pm> Monday. We'll see if there's any new activity or what. This was mysecond> flare this month. That's not typical of my MS. My last shower wasSaturday> morning and I got one Monday at 9 pm. Boy did it feel good. Ididn't move> much this weekend. I went from one couch where I sat, to the othercouch I> laid on and then to the bathroom. I was so weak I had to use mywalker with> wheels. That wore me out too. but I'm not bad enough for a scooter> according to my last neuro....lol I guess I'm not bad enough longenough or> just enough I guess....lol When I'm that weak I couldn't contol ascooter> anyways. I get vertigo so bad I couldn't see where I wasdriving....lol So> the wheeled walker is best I guess. But I'm better, I can't sleep I'm> hyped! But I can walk under my own power at the moment. > I get caught up on the groups email and then I get behind again. arrgghhhh!> x0x0x0> ShirleyPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 Thanks Jane. Oh I really realize how lucky I am with my MS. I know it could be worse and I am thankful for that everyday. It's just been a year and the Avonex has probalbly just started working. Or we'll know if it has I guess...lol I'm glad Marta has such high spirit. I know I will get a regular w/c. And that's good. I won't be able to use it in the house. OUr house isn't ready for a w/c, like the doorframes. But if I'm having a flare I couldn't move a w/c on my own. So the wheeled walker is good for me now. When I need it. Most of the time you'd know nothing was wrong with me. I have been using a borrowed w/c for a year now. It's old and it doesn't push easily. We used it last year in MD and DC. I have no problem using it! We get to do more now. The cooling vest has helped too. Thanks, x0x0x0 Shirley -- Re: Shirley Shirley, I had written you a long response and all of a sudden"Poof!", it was gone to somewhere out in space. I'll try to rememberwhat I said before but if I can't just remember that it's part of theBF that I have also.I'm so sorry that your MS has obviously flared so much in the pastyear. It's hard to believe that you've actually even had thisdiagnosis that long. I'm sure each and every flare gets more and morefrightening...I have a friend in CA who has MS. Her son was goodfriends with my 30 year old son when they were in high school and shehad been dx'd 10 years or so before that. Her MS would flare for awhile and then go into remission, sometimes for several years. She'snow in her 50's and her husband has gone through the bit where he canno longer care for her at home so they found a wonderful new carefacility where all the patients have MS. Marta, being the organizerthat she is, has done all sorts of things to liven up the place, planoutings, and work as a teacher mentor to those who had basicallygotten so depressed about their plight but Marta has done wonders tohelp with the program. She said that since she was to the point whereshe needed someone to stay with her, why not go to this place duringthe week, and then on weekends, Dan and she have her at home stilldoing amazing things together. Marta remained mobile for a long timebecause her neuro prescribed an electric chair for her and she had alift in her van so she could still get out and do her volunteer workwith the kids schools. You are a long, long way from being as infirmed as Marta but I justwanted to tell you about her because even though she had several majorflares at first after she was first dx'd, she had many months andyears at a time when she was in remission. I hope that your new neurowill Rx a motorized chair for you. It will make it so much easier foryou to get around and allow you and Steve to do lots more thingstogether on weekends when you can get out and go. I am praying foryou that the yearly checkup doesn't show much change. Please tell ushow we can be of greater support to you if that is possible. We loveyou and know you have a fight on your hands to work with your dx andlive the life you and Steve want to live.Hugs and many prayers,Jane> I've been in a MS flare starting slowly on Thursday. By Sunday, Steve> called the neuro on call. I was put on 80 mgs of prednisone onSunday and> another 80 mgs today/Monday. I saw my new neuro today. I all ready had> this appt scheduled. It was my 1 year appt. I got a MRI done at6:30 pm> Monday. We'll see if there's any new activity or what. This was mysecond> flare this month. That's not typical of my MS. My last shower wasSaturday> morning and I got one Monday at 9 pm. Boy did it feel good. Ididn't move> much this weekend. I went from one couch where I sat, to the othercouch I> laid on and then to the bathroom. I was so weak I had to use mywalker with> wheels. That wore me out too. but I'm not bad enough for a scooter> according to my last neuro....lol I guess I'm not bad enough longenough or> just enough I guess....lol When I'm that weak I couldn't contol ascooter> anyways. I get vertigo so bad I couldn't see where I wasdriving....lol So> the wheeled walker is best I guess. But I'm better, I can't sleep I'm> hyped! But I can walk under my own power at the moment. > I get caught up on the groups email and then I get behind again. arrgghhhh!> x0x0x0> ShirleyPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 thanks . I will survive. Done worry about me. But thanks! x0x0x0 Shirley -- Shirley Shirley, I'm praying for you. I wish I could do more. Hugs, I got a shower, finally....lol I've been in a MS flare starting slowly on Thursday. By Sunday, Steve called the neuro on call. I was put on 80 mgs of prednisone on Sunday and another 80 mgs today/Monday. I saw my new neuro today. I all ready had this appt scheduled. It was my 1 year appt. I got a MRI done at 6:30 pm Monday. We'll see if there's any new activity or what. This was my second flare this month. That's not typical of my MS. My last shower was Saturday morning and I got one Monday at 9 pm. Boy did it feel good. I didn't move much this weekend. I went from one couch where I sat, to the other couch I laid on and then to the bathroom. I was so weak I had to use my walker with wheels. That wore me out too. but I'm not bad enough for a scooter according to my last neuro....lol I guess I'm not bad enough long enough or just enough I guess....lol When I'm that weak I couldn't contol a scooter anyways. I get vertigo so bad I couldn't see where I was driving....lol So the wheeled walker is best I guess. But I'm better, I can't sleep I'm hyped! But I can walk under my own power at the moment. I get caught up on the groups email and then I get behind again. arrgghhhh! x0x0x0 Shirley * Hatt Design *Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2003 Report Share Posted July 25, 2003 very pretty. thanks for the heads up. Shirls -- Shirley Shirls, I know you like those stretch watches that I've been hunting for. I just ordered three of them from a friend of mine that makes them. She has some that are a little bigger than normal so they don't leave marks on my arm and I was thrilled with them. If you email her and tell her you're a friend of mine (Christy from The Dock) she may cut the price a bit. Her name is Iris and the website is http://www.frostyiris.com/catalog/subcat20.shtml ChristyPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2003 Report Share Posted July 25, 2003 very pretty. thanks for the heads up. Shirls -- Shirley Shirls, I know you like those stretch watches that I've been hunting for. I just ordered three of them from a friend of mine that makes them. She has some that are a little bigger than normal so they don't leave marks on my arm and I was thrilled with them. If you email her and tell her you're a friend of mine (Christy from The Dock) she may cut the price a bit. Her name is Iris and the website is http://www.frostyiris.com/catalog/subcat20.shtml ChristyPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2003 Report Share Posted July 25, 2003 very pretty. thanks for the heads up. Shirls -- Shirley Shirls, I know you like those stretch watches that I've been hunting for. I just ordered three of them from a friend of mine that makes them. She has some that are a little bigger than normal so they don't leave marks on my arm and I was thrilled with them. If you email her and tell her you're a friend of mine (Christy from The Dock) she may cut the price a bit. Her name is Iris and the website is http://www.frostyiris.com/catalog/subcat20.shtml ChristyPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2003 Report Share Posted July 25, 2003 I'm up, too. Does anybody know why my messages aren't posting? Shirley Why are we up? Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2003 Report Share Posted July 25, 2003 I'm up, too. Does anybody know why my messages aren't posting? Shirley Why are we up? Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2003 Report Share Posted July 26, 2003 I don't know, why are we up....lol -- Shirley Why are we up? Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2003 Report Share Posted July 26, 2003 I don't know, why are we up....lol -- Shirley Why are we up? Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2003 Report Share Posted July 26, 2003 I don't know, why are we up....lol -- Shirley Why are we up? Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 nothing scary there....lol Steve has to have scarey...lol thanks! Shirls -- SHIRLEY I'm shopping (I know, I know) but I've bought a few things from this seller before and they have some Halloween stuff up now at really cheap prices so I thought of you. http://cgi6.ebay.com/ws/eBayISAPI.dll?ViewSellersOtherItems & userid=jgrogg & include=0 & since=-1 & sort=3 & rows=50 JGROGG is the seller name if that link doesn't work. ChristyPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2003 Report Share Posted October 8, 2003 THANK'S!!!!!!! Shirley Go here: http://groups.yahoo.com/group/NaturalThyroidHormones/ click on " files " on the left hand column....'links' and 'database' are still missing.......sue in TN ~~~~~~~~~~~~~~ > How in the heck do you get to the files section?? All I have on the e-mail's is a place to unsubscribe > Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2003 Report Share Posted October 8, 2003 THANK'S!!!!!!! Shirley Go here: http://groups.yahoo.com/group/NaturalThyroidHormones/ click on " files " on the left hand column....'links' and 'database' are still missing.......sue in TN ~~~~~~~~~~~~~~ > How in the heck do you get to the files section?? All I have on the e-mail's is a place to unsubscribe > Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2003 Report Share Posted October 8, 2003 THANK'S!!!!!!! Shirley Go here: http://groups.yahoo.com/group/NaturalThyroidHormones/ click on " files " on the left hand column....'links' and 'database' are still missing.......sue in TN ~~~~~~~~~~~~~~ > How in the heck do you get to the files section?? All I have on the e-mail's is a place to unsubscribe > Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Janie, THAT " S what I was thinking tonight at work about the ranges,sooooo,I'm gonna walk over to his office tomorrow and get copies!! I've seen hundreds of values lately and NONE that low!! He's going to lower my dose,,,, soooo ,The hospital in McCall does them.That is the ranges he gave me today when I asked for them. Shirl Shirley testing Everytime I attempt to reply to Shirley's email, I get the " unavailable " page. So am trying it again with a straight post: Shirley, the numbers fit, but the ranges are very strange. Are you sure those are the right ranges?? And what lab is this?? Janie > TSH--0.01---. > FT4-.087---(.59--1.5) > FT3---2.30---(.2--1.79) > Forgot to write down the range for TSH,,so why do I still feel so crappy?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 testing Everytime I attempt to reply to Shirley's email, I get the " unavailable " page. So am trying it again with a straight post: Shirley, the numbers fit, but the ranges are very strange. Are you sure those are the right ranges?? And what lab is this?? Janie > TSH--0.01---. > FT4-.087---(.59--1.5) > FT3---2.30---(.2--1.79) > Forgot to write down the range for TSH,,so why do I still feel so crappy?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 What do I do about Pancreatic problems? That's a whole new ballgame. Shirley Shirley > > > testing > > Everytime I attempt to reply to Shirley's email, I get > the " unavailable " page. So am trying it again with a straight post: > > Shirley, the numbers fit, but the ranges are very strange. Are you > sure those are the right ranges?? And what lab is this?? > > Janie > > > TSH--0.01---. > > FT4-.087---(.59--1.5) > > FT3---2.30---(.2--1.79) > > Forgot to write down the range for TSH,,so why do I still feel so > crappy?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Good Shirley. Because it doesn't look right, and I'm not sure I would believe them even if they said the ranges were right. Let us know. The 2.3 is characteristic of being quite lot in the free T3 range of most labs with different ranges. And if so, and if you have that low of a TSH, also, you may have a pancreatic problem. Janie > Janie, > THAT " S what I was thinking tonight at work about the ranges,sooooo,I'm gonna walk over to his office tomorrow and get copies!! I've seen hundreds of values lately and NONE that low!! He's going to lower my dose,,,, soooo ,The hospital in McCall does them.That is the ranges he gave me today when I asked for them. > Shirl > Shirley > > > testing > > Everytime I attempt to reply to Shirley's email, I get > the " unavailable " page. So am trying it again with a straight post: > > Shirley, the numbers fit, but the ranges are very strange. Are you > sure those are the right ranges?? And what lab is this?? > > Janie > > > TSH--0.01---. > > FT4-.087---(.59--1.5) > > FT3---2.30---(.2--1.79) > > Forgot to write down the range for TSH,,so why do I still feel so > crappy?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Janie, I've been searching for hours and I can't find anything about the pancreas that even remotely come's close to any symtoms I have. Do you have something about it? All I can say IS,he better not have lied to me!Someone will eat some tests!!! Will post what I find out. Thank's, Shirley Shirley > > > testing > > Everytime I attempt to reply to Shirley's email, I get > the " unavailable " page. So am trying it again with a straight post: > > Shirley, the numbers fit, but the ranges are very strange. Are you > sure those are the right ranges?? And what lab is this?? > > Janie > > > TSH--0.01---. > > FT4-.087---(.59--1.5) > > FT3---2.30---(.2--1.79) > > Forgot to write down the range for TSH,,so why do I still feel so > crappy?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2003 Report Share Posted October 16, 2003 I think Janie meant pituitary---not pancreatic...maybe she got her p's mixed up.......LOL.....sue in TN ~~~~~~~~~~~~ > Janie, > I've been searching for hours and I can't find anything about the pancreas that even remotely come's close to any symtoms I have. Do you have something about it? > All I can say IS,he better not have lied to me!Someone will eat some tests!!! > Will post what I find out. > Thank's, > Shirley > Re: Shirley > > > Good Shirley. Because it doesn't look right, and I'm not sure I > would believe them even if they said the ranges were right. Let us > know. The 2.3 is characteristic of being quite lot in the free T3 > range of most labs with different ranges. And if so, and if you have > that low of a TSH, also, you may have a pancreatic problem. > > Janie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2003 Report Share Posted October 16, 2003 Oh DUHHH! That is exactly what I did!! Geez. Laughing at myself. Yes, it's PITUITARY!!!!!!!!!!!!!!!!!!!!! hahaha Janie > I think Janie meant pituitary---not pancreatic...maybe she got her >p's mixed up.......LOL.....sue in TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 Janie, Do you have any info on this?. Can't afford any more tests right now,is there something I can buy from the HFS or do without being tested ? Thanks! Shirley Re: Shirley Oh DUHHH! That is exactly what I did!! Geez. Laughing at myself. Yes, it's PITUITARY!!!!!!!!!!!!!!!!!!!!! hahaha Janie > I think Janie meant pituitary---not pancreatic...maybe she got her >p's mixed up.......LOL.....sue in TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 I will do that,have'nt made it over there yet,been very busy raising money for a friend of ours who had a horse fall on him,spent a week and a half in the trauma unit. Do it Monday for sure,I agree,something is fishy about the ranges! Shirley Re: Shirley Shirley, I have volumes of info in my files, but remarkably, never saved anything on the pituitary and secondary hypothyroid, which a pituitary disorder or tumor (benign) causes. It was your odd test results that made me wonder. You have an incredibly low T3 for someone with such a LOW TSH (included below for those who didn't know)!! But then again, you were going to check on those odd ranges, too. For example, the range my lab uses for free T3 is 2.3 - 4.2. SO, if your ranges that you gave are off, you may be VERY low if your lab actually uses a range more similar to the above.... Give us an update on what you find out about those ranges you gave, which seem so strange. Then we can better comment. OK? Janie TSH--0.01---. FT4-.087---(.59--1.5) FT3---2.30---(.2--1.79) Forgot to write down the range for TSH,,so why do I still feel so crappy?? > Janie, > Do you have any info on this?. Can't afford any more tests right now,is there something I can buy from the HFS or do without being tested ? Thanks! > Shirley Quote Link to comment Share on other sites More sharing options...
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