Guest guest Posted February 8, 2002 Report Share Posted February 8, 2002 Alba: Here is one web-site that you can fine out more about SDS/MSA . Just post any questions you have here on this list and I'm sure other's will have an answer for you and I'll try to help where I can. I know Fred and I had alot of questions when he was first DX. One thing that we found out is to drink lots of water. People with MSA had problems with UTI's and this helps. Also they have lower then normal tempatures. Fred's run around 96.3. I'm not sure how they measure that in Paris and exercise, this helps. Once again just ask what yo'd like to know. Shy-Drager syndrome. | ahealthyme.com God Bless Vera ************************************** Subject: Thanks Thanks Vera, I think i am on the good group. I think that french patients are on this group : I can speak french..but it's a good think also.I must write in english if I want and if I can!! I have many questions .. Many.. Alba Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2002 Report Share Posted February 8, 2002 Alba: Here is one web-site that you can fine out more about SDS/MSA . Just post any questions you have here on this list and I'm sure other's will have an answer for you and I'll try to help where I can. I know Fred and I had alot of questions when he was first DX. One thing that we found out is to drink lots of water. People with MSA had problems with UTI's and this helps. Also they have lower then normal tempatures. Fred's run around 96.3. I'm not sure how they measure that in Paris and exercise, this helps. Once again just ask what yo'd like to know. Shy-Drager syndrome. | ahealthyme.com God Bless Vera ************************************** Subject: Thanks Thanks Vera, I think i am on the good group. I think that french patients are on this group : I can speak french..but it's a good think also.I must write in english if I want and if I can!! I have many questions .. Many.. Alba Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2002 Report Share Posted February 9, 2002 Alba, If you need to write in french, I know a french lady that could translate. Ray Thanks > Thanks Vera, > I think i am on the good group. > I think that french patients are on this group : I can speak > french..but it's a good think also.I must write in english if I want > and if I can!! > I have many questions .. Many.. > Alba > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2002 Report Share Posted February 9, 2002 Alba, If you need to write in french, I know a french lady that could translate. Ray Thanks > Thanks Vera, > I think i am on the good group. > I think that french patients are on this group : I can speak > french..but it's a good think also.I must write in english if I want > and if I can!! > I have many questions .. Many.. > Alba > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2002 Report Share Posted February 9, 2002 Alba, If you need to write in french, I know a french lady that could translate. Ray Thanks > Thanks Vera, > I think i am on the good group. > I think that french patients are on this group : I can speak > french..but it's a good think also.I must write in english if I want > and if I can!! > I have many questions .. Many.. > Alba > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 Dear Aletta: I am thinking about your son's plight and the pain you must be having because of that. I hope things will ease for you soon. Lou R.At 09:40 PM 3/24/2002 -0800, you wrote: Thanks for the kindness in our response to my bad time. I hauled myself to the hospital (about 1 hour by public transit). My son was still in the hallway on a stretcher and in restraints. He was very sedated. Asked me for some sweets. Got him Gatorade chocolate and Jelly Babies. Not clear why anyone would have him dragged out of church when he's not done anything wrong. Upset that he's not safe even on holy ground. Can't understand why they took him in (he was holding a small Nepalese three sided dagger, used ceremonially for slaying dragons, which represents safety from demons to him), I told him he should be grateful he's not facing a weapons charge. He was still parked in the hallway when I got there, later he was moved to a private room in Emergency, there is still no room in psychiatric. No doctor was available to speak with. I'll go back to see him tomorrow. The only thing worse than an HMO is when you let the government run your HMO About the blueberries; funny how a person reacts to single foods (maybe amplified with MSA?) Peanuts get me at times when all other laxatives have failed. Nothing promotes diarrhea more than vegetables, the less cooked or worse. A secretary or administrator of some kind would most likely take more stress from me than even a housekeeper. I cannot keep in my head who to call what to pay, chronology is particularly hard. Much of the time I know something needs to be done just not sure what. I forgotten to pay bills, overpaid them, and miss appointments reliably by exactly 24 hours (either way). Not that I am daft or demented, it just doesn't want to process and with no one around to give me reminders it can get really piled up, with me overwhelmed. Stress is about the worst thing. Most damaging physically is that I forget completely to eat or use the washroom, and wonder why I might feel odd. Color coded pill boxes with time to be taken messages written right on them keep my meds straight most of the time. Have not seen any change in bowels since taking calcium antagonist, but then with upsets this weekend, it would be unrealistic to make any judgements. aletta mes, vancouver, bc canada http://www.aletta.0catch.com If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 Dear Aletta: I am thinking about your son's plight and the pain you must be having because of that. I hope things will ease for you soon. Lou R.At 09:40 PM 3/24/2002 -0800, you wrote: Thanks for the kindness in our response to my bad time. I hauled myself to the hospital (about 1 hour by public transit). My son was still in the hallway on a stretcher and in restraints. He was very sedated. Asked me for some sweets. Got him Gatorade chocolate and Jelly Babies. Not clear why anyone would have him dragged out of church when he's not done anything wrong. Upset that he's not safe even on holy ground. Can't understand why they took him in (he was holding a small Nepalese three sided dagger, used ceremonially for slaying dragons, which represents safety from demons to him), I told him he should be grateful he's not facing a weapons charge. He was still parked in the hallway when I got there, later he was moved to a private room in Emergency, there is still no room in psychiatric. No doctor was available to speak with. I'll go back to see him tomorrow. The only thing worse than an HMO is when you let the government run your HMO About the blueberries; funny how a person reacts to single foods (maybe amplified with MSA?) Peanuts get me at times when all other laxatives have failed. Nothing promotes diarrhea more than vegetables, the less cooked or worse. A secretary or administrator of some kind would most likely take more stress from me than even a housekeeper. I cannot keep in my head who to call what to pay, chronology is particularly hard. Much of the time I know something needs to be done just not sure what. I forgotten to pay bills, overpaid them, and miss appointments reliably by exactly 24 hours (either way). Not that I am daft or demented, it just doesn't want to process and with no one around to give me reminders it can get really piled up, with me overwhelmed. Stress is about the worst thing. Most damaging physically is that I forget completely to eat or use the washroom, and wonder why I might feel odd. Color coded pill boxes with time to be taken messages written right on them keep my meds straight most of the time. Have not seen any change in bowels since taking calcium antagonist, but then with upsets this weekend, it would be unrealistic to make any judgements. aletta mes, vancouver, bc canada http://www.aletta.0catch.com If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 Dear Aletta: I am thinking about your son's plight and the pain you must be having because of that. I hope things will ease for you soon. Lou R.At 09:40 PM 3/24/2002 -0800, you wrote: Thanks for the kindness in our response to my bad time. I hauled myself to the hospital (about 1 hour by public transit). My son was still in the hallway on a stretcher and in restraints. He was very sedated. Asked me for some sweets. Got him Gatorade chocolate and Jelly Babies. Not clear why anyone would have him dragged out of church when he's not done anything wrong. Upset that he's not safe even on holy ground. Can't understand why they took him in (he was holding a small Nepalese three sided dagger, used ceremonially for slaying dragons, which represents safety from demons to him), I told him he should be grateful he's not facing a weapons charge. He was still parked in the hallway when I got there, later he was moved to a private room in Emergency, there is still no room in psychiatric. No doctor was available to speak with. I'll go back to see him tomorrow. The only thing worse than an HMO is when you let the government run your HMO About the blueberries; funny how a person reacts to single foods (maybe amplified with MSA?) Peanuts get me at times when all other laxatives have failed. Nothing promotes diarrhea more than vegetables, the less cooked or worse. A secretary or administrator of some kind would most likely take more stress from me than even a housekeeper. I cannot keep in my head who to call what to pay, chronology is particularly hard. Much of the time I know something needs to be done just not sure what. I forgotten to pay bills, overpaid them, and miss appointments reliably by exactly 24 hours (either way). Not that I am daft or demented, it just doesn't want to process and with no one around to give me reminders it can get really piled up, with me overwhelmed. Stress is about the worst thing. Most damaging physically is that I forget completely to eat or use the washroom, and wonder why I might feel odd. Color coded pill boxes with time to be taken messages written right on them keep my meds straight most of the time. Have not seen any change in bowels since taking calcium antagonist, but then with upsets this weekend, it would be unrealistic to make any judgements. aletta mes, vancouver, bc canada http://www.aletta.0catch.com If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Dear : I am so sorry for the day that you have had and poor Warren too. I hope that you have not taken the things that he said to you too personally. As you said, never in his right mind would he say such things. I would think that being deprived of liquids would dehydrate him and maybe cause some changes in his behavior. You know that they always hurt the one they love. Maybe you should take the time to have yourself a good cry, it can't hurt. Be sure that many people here on this list are praying for you and Warren and hope that they figure something out with him soon. Love, Jean & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 , I am sorry that Warren is having to go through this (you, too). Things shouldn't be this hard. I hope all goes well with the colonoscopy--my husband said the preparation for that was not fun. I cannot imagine what it is like for someone with MSA. Hang in there and I hope tomorrow is better, Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 , I am so sorry that you are Warren are being put through so much more than you should be. I know that it is so hard on the both of you. , if you feel like crying go ahead and cry. Anyone who tells you crying doesn't help is wrong. I think it does help sometimes. It at least lets go of some of the stress you are feeling. God Bless, Belinda > Hi, Thanks to all that responded to my mail last night. They still haven't > done the colonoscopy on Warrem as the nurses (I guess) did not clean his > bowel out thoroughly, so this afternoon they are doing a laxative process > through the nose to make sure he is clean. Poor dear is so confused. They > had given him a sedative before doing the process and then couldn't do it. > He is thirsty and they can't give him anything until he has the new process. > He was so confused and angry that he started blaming me for all the > problems. (Never in his right mind would he have said some of the things he > did) I finally left after he had gone to sleep so I might have a little > time to relax. > > Of course he doesn't look well or feel well and I just hate that he has togo > through all of this. Right now I could just roll up into a ball and cry. > Maybe I will. > > Thanks again, > S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 , I am so sorry that you are Warren are being put through so much more than you should be. I know that it is so hard on the both of you. , if you feel like crying go ahead and cry. Anyone who tells you crying doesn't help is wrong. I think it does help sometimes. It at least lets go of some of the stress you are feeling. God Bless, Belinda > Hi, Thanks to all that responded to my mail last night. They still haven't > done the colonoscopy on Warrem as the nurses (I guess) did not clean his > bowel out thoroughly, so this afternoon they are doing a laxative process > through the nose to make sure he is clean. Poor dear is so confused. They > had given him a sedative before doing the process and then couldn't do it. > He is thirsty and they can't give him anything until he has the new process. > He was so confused and angry that he started blaming me for all the > problems. (Never in his right mind would he have said some of the things he > did) I finally left after he had gone to sleep so I might have a little > time to relax. > > Of course he doesn't look well or feel well and I just hate that he has togo > through all of this. Right now I could just roll up into a ball and cry. > Maybe I will. > > Thanks again, > S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Ann, That is so sweet. I am glad you decided to keep each other after 51 1/2 years. It would be kind of hard and tiring to have to start training another one all over again. It is so wonderful to see a couple take care of each other through sickness and in health. There are alot of wonderful couples on this message board. It is such a blessing to see that also. I hope you are feeling better soon! God bless, Belinda > I want to thank all that wished me well during this ordeal of a nasty > bug. I am going to try to really take it easy until I get well, Poor Al > is having to wait on me instead of me on him..He is such a jewel. Think > I'll keep him after 51 1/2 years its too late to change our mind. > > Ann from Soddy,TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 There is a short article about my doctor at http://www.iptv.org/lii/featDetail.cfm?featNum=250 if anyone is interested. It kindof suprised me. I always thought he was just an old man that talked funny. incredible story! thank u jon! jack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 Hi Libby, I am in the USA. I bet Australia is just beautiful though! I have always wanted to visit there. Anyway, what you are doing to protect your child is great! My family and friends know that they are not allowed to have peanut or nut anything the day that they are going to be visiting with us. For the most part it is ok. I do get a lot of hassle though that I am over paranoid and that I need to loosen up but I don't. Peanuts/nuts are like arsenic to my child. I won't put him in danger lol. I think that is great that you sent a letter out to everyone to keep them aware of a danger of an allergy. You are a good mom! I hope that you are having a great day! Talk to you later! Alyssa Mom to -anaphylactic to peanuts, allergic to dairy and soy--has eczema & - no known allergies thanks Hi girls!thanks for the welcome. It really is like being blindfolded at first so it's so encouraging to know there are others out there! I am in Sydney, Australia, although I'm actually from England originally. I imagine you are all US based..am I right?Today I sent 30 or so either an email or hard copy letter outlining the anaphylactic shock and all my expectations of friends and family..is telling them in no uncertain terms about cross contamination, foods he can have and can't have and the epipen. Did you all do that? I had a few bad experiences the few days after the shock where I told people what he could have and they thought they knew better. It's very hard isn't it. I feel awful asking people to do certain things which is ludicrous isn't it. It's the British person in me! I can feel myself withdrawing...or at least just having play dates at my house so I know he is safe. I suppose this is a normal reaction too is it?Tomorrow night I go to a support group for the first time which is daunting. I want to be in a group of like minded people but at the same time don't want to dwell..or make it worse. Did anyone else feel this?Anyway..got 4 kids to go and check (2 mine, 2 step!)love to all,Libby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 > Anyway..got 4 kids to go and check (2 mine, 2 step!) > love to all, > Libby Hey Liby I know just what you are going through. My son I don't think other then the moms I have become friends with he doesn't go to there houses. I feel a bit more relaxed but always on alerty kwim. O and I feel totally withdrawn. Almost like everyone is talking about me and the peanut allergy kid. But that may be the fact that I met a woman who is crazy in town who told me I was going to have the hardest time with this. Ugggg Traci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Hi Grace, Thanks for your beautiful post. I hope you're able to spend lots of time with your mother this holiday season. Holly, I've missed all but the last few posts of whatever was going on, but I'm happy to see that everything's resolved. Happy Holidays to everyone in our special little Graves' family here, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Hi Grace, Thanks for your beautiful post. I hope you're able to spend lots of time with your mother this holiday season. Holly, I've missed all but the last few posts of whatever was going on, but I'm happy to see that everything's resolved. Happy Holidays to everyone in our special little Graves' family here, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2003 Report Share Posted November 3, 2003 No thanks Amy....I believe your sister and you have an extremely close relationship, so I am glad that you can talk openly about this. I think that is the most important. I hope your sister and you will share many happy moments taking care of baby in a few months and being able to remember her angeldaughter. love, Ghislaine > Elaine, Ghislaine, Taryn, > > Thank you all for your kind words in response to my sister. I really appreciate all of your insight. It's funny because I am a counselor by profession, however it's always harder to know what to say when it's your own family. I have learned so much about grief, loss, compassion and hope by reading everyone's postings over the last several months. All of which has enriched me both personally and professionally!!! My sister and I have had a chance to talk this weekend and she echoed alot of the same sentiments Ghislaine shared. Thank you! Thank you! > > Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2003 Report Share Posted November 3, 2003 No thanks Amy....I believe your sister and you have an extremely close relationship, so I am glad that you can talk openly about this. I think that is the most important. I hope your sister and you will share many happy moments taking care of baby in a few months and being able to remember her angeldaughter. love, Ghislaine > Elaine, Ghislaine, Taryn, > > Thank you all for your kind words in response to my sister. I really appreciate all of your insight. It's funny because I am a counselor by profession, however it's always harder to know what to say when it's your own family. I have learned so much about grief, loss, compassion and hope by reading everyone's postings over the last several months. All of which has enriched me both personally and professionally!!! My sister and I have had a chance to talk this weekend and she echoed alot of the same sentiments Ghislaine shared. Thank you! Thank you! > > Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2003 Report Share Posted November 3, 2003 No thanks Amy....I believe your sister and you have an extremely close relationship, so I am glad that you can talk openly about this. I think that is the most important. I hope your sister and you will share many happy moments taking care of baby in a few months and being able to remember her angeldaughter. love, Ghislaine > Elaine, Ghislaine, Taryn, > > Thank you all for your kind words in response to my sister. I really appreciate all of your insight. It's funny because I am a counselor by profession, however it's always harder to know what to say when it's your own family. I have learned so much about grief, loss, compassion and hope by reading everyone's postings over the last several months. All of which has enriched me both personally and professionally!!! My sister and I have had a chance to talk this weekend and she echoed alot of the same sentiments Ghislaine shared. Thank you! Thank you! > > Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Kent My son's name is Kent. You don't hear it much. Cleveland Clinic is probably the closest place to you who does fresh biopsies. The lab people have to be in the operating room to receive the muscle and whisk it away to the lab and work on it immediately. There aren't many places that do this. I live in MI and had to go to Atlanta as Cleveland Clinic wasn't doing them yet. These places usually divide the muscle into three parts - one to work on fresh, one to freeze for electron microscope testing which includes staining and one to freeze for later testing if more testing is developed. Blood work and urine workup are usually a part of the early testing. A few, very few, types of mito can be found with only a genetic look in a bloood sample. laurie > thanks Laurie, Barbara and Hazel for your info and encouragement. > so it seems i need to talk to the doc doing the biopsy about enzyme > assays on a fresh sample as well as COX, SDH and gamouri staining. > does that sound right? is there a good pathologist here in illinois? > kent > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Thanks all for the congrats on my losing this week, have to give credit to changing up the walking and to not eating late at night also. I have started doing Swedish Weaving and that keeps my hands busy so can't eat while doing it, and when I put it down its too late . It is such a great feeling to get up in the mornings and know that I haven't eaten something I shouldn't have. Just finished a twin size blanket and have to get another one ready to work on this weekend since it is going to be bad weather. Make some taco soup and watch the olympics and weave, sounds good to me. For all those that are still weighing in this week, good luck . Hugs, Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009  Walt... what a laugh this morning! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! THANKS You may be able to help me. As always, when I need advice or counsel I turn to my most trusted friends. I do this because I know you will always be candid and honest with me. I need your opinion on something that has been bothering me for some time now. I am counting on you so please don't let our long lasting friendship influence your answer. Thanks in advance! SCROLL DOWN PLEASE Does this bikini make my butt look too big??? Hope this put a smile on your face! BLESSED ARE THE CRACKED, FOR THEY ARE THE ONES WHO LET IN THE LIGHT! Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.