Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 HI Lyle. I wondered where you were. Hope you continue to get better. Have been remembering you in my prayers. Please keep us informed God Bless, Jo UpdateHi All,Haven't been able to keep up with mail. Hope everyone is doing well. I had my check up at the Mayo Clinic last week. MY breathingcontinues to improve. I am now on 75 mg Cytoxan and 6mgprednisone. Dr. Luthra said we will go down to 5mg on theprednisone and if that goes well then reduce the Cytonan to50. When congestion plugs my bronchial tubes I still use the C Pap to help open things up.Everyone have a happy new year.LyleDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 , So good to finally hear from you again!!! Hope things just keep getting better for you. So sorry about your grandson but glad he is home now. Please keep us posted more on how you are doing. You are in my thoughts and prayers. Have a happy New Year. HUgs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 Lyle, So good to hear from you. Seems like you are doing better. Please keep us posted. Miss you in the group. If Glenda would quit posting so much, you might be able to keep up.LOL Just kidding, I love you Glenda!!! Have a safe, healthy and happy New Year Lyle. C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 Lyle, Glad to hear you are doing better. Happy New Year to you and I pray you continue to improve. Hugs, Sandy ----- Original Message ----- > Hi All, > > Haven't been able to keep up with mail. Hope everyone > is doing well. > > I had my check up at the Mayo Clinic last week. MY breathing > continues to improve. I am now on 75 mg Cytoxan and 6mg > prednisone. Dr. Luthra said we will go down to 5mg on the > prednisone and if that goes well then reduce the Cytonan to > 50. > > When congestion plugs my bronchial tubes I still use the > C Pap to help open things up. > > Everyone have a happy new year. > > Lyle > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 Lyle, Good to hear from you! Glad that you are doing better. I will send good thoughts and prayers you way so that you will get even better. Lots of Love Glenda --- geddeslee@... wrote: > Hi All, > > Haven't been able to keep up with mail. Hope > everyone > is doing well. > > I had my check up at the Mayo Clinic last week. MY > breathing > continues to improve. I am now on 75 mg Cytoxan and > 6mg > prednisone. Dr. Luthra said we will go down to 5mg > on the > prednisone and if that goes well then reduce the > Cytonan to > 50. > > When congestion plugs my bronchial tubes I still use > the > C Pap to help open things up. > > Everyone have a happy new year. > > Lyle > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Hi ! Yay! you're finally starting the imuran you shouldhave started acouple of weeks ago. Not sure Imuran does as much with LFT's but will check when I get home. It's probably a good idea for you to gradually get used to a lower salt diet. Unless you're having swelling now, or high blood pressure from the prednisone not sure it's essential to do it in any drastic form right now. The reason I say it's probaly a good idea to gradually get used to a low salt diet is that you may need to be on one eventually for your heart and it's easier to do it gradually (no rush) than to have to drastically reduce. Certainly wouldn't cut back on water (unless you drink A LOT) Carolyn update Hi everyone. Well I went to my PCP today and he reluctantly gave me a prescription for Imuran. He is unfamiliar with it and I could tell he wasnt sure about giving it to me. He wants me to increase my pred and wait 2-3 weeks before I start the Imuran. Is more concerned about the sleep deprivation. Gave me a RX for something to sleep. I didn't get it filled yet. I just want the flare to go away. He put me on 50mg 3 times a day. Does this sound right?? Told me to take it with my meals. He said he would run CBC every 2-3 weeks . Are they suppose to check for liver and kidney function on this like metho?He also said I had Cushings syndrom from the pred. To cut back on salt and liquids. Does this sound right? I'm so confused now. Glad to hear any input that you might have. Sandy, I can't quit thinking of you and I know my problems are minimal. Please know that you and your family are in my prayers. I have put your family on a few prayer chains here. There are plenty of prayers going your way. Please know I love you and you are constatly on my mind.HugsDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Hi Your MD probably wants to reduce salt intake to avoid any additional swelling and water retention... did he give you a diuretic also? I have some Cushing like symptoms too, but slowly diminish as I lower my pred dose... also you don't want to risk high BP... thinking of you hugs Carmela ********************* > >He also said I had Cushings syndrom from the pred. To cut back on salt and >liquids. Does this sound right? I'm so confused now. Glad to hear any >input that you might have. > > _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Carolyn, Well I have the RX for the Imuran but haven't got it filled yet. I know, Dont yell!!!LOL I don't eat much salt. My BP is always low, but the swelling is bad. Won't be hard to cut down on salt and but I know I should be drinking more water. How are you doing??? Are they done with you yet and what have they found.??? Be sure to let us know about your room with fireplace when you get there. Thinking of you always Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2001 Report Share Posted January 6, 2001 In a message dated 1/6/01 4:39:13 AM Pacific Standard Time, carmela999@... writes: << I have some Cushing like symptoms too, but slowly diminish as I lower my pred dose... also you don't want to risk high BP... >> Carmela, My BP has always been low and is still fine. I did take lasix but it didn't do much good. I find that if I take a B6 evey once in a while it really is a better diuretic than anything else. My body doesn't retain any B6 so it also helps that. I have been on low doses of pred (15mg and under) for a long time. Would think some of the Cushing would go away. I had to up the pred to 25mg today. UGH!!! Oh well, it will all work out. Thanks for your post. Hope you are doing well and good luck with your pred decrease. Keep it slow!!!! Don't want you sick too. Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2001 Report Share Posted January 19, 2001 That is great news!!! Yeah is right!!! Which one are you going to choice the man or the woman???? That is an interesting choice. Did your dr. say which he preferred?? About time something worked out for you girl! Sending good thoughts and prayers your way! Lots of Love Glenda --- RCColloran@... wrote: > Hi all, well we still have lights. Went to the > neurologist today. He just > kind of threw up his hands and said my problems were > out of his league and is > sending me to a neurosurgeon. Thinks now that it > may be Chiari related. > But.......he did give me the names of 2 rheumys that > are close to me. One is > a woman the other a man. Says they are both great > to work with and easy to > talk to. Won't hurt to check them out. So maybe I > am making headway. > Yeah!!!! > > Well, I'm going to chat now, can only stay a few > minutes. Talk to you all > tomorrow. > > Hugs > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2001 Report Share Posted January 20, 2001 In a message dated 1/19/01 8:01:36 PM Pacific Standard Time, eyeoreluv@... writes: << Which one are you going to choice the man or the woman???? That is an interesting choice. Did your dr. say which he preferred?? >> Glenda, he said they were both wonderful (we'll see) and that he would see either one. I'm going to see who I can get in sooner with. He also told me he would help me get in if there is a long waiting list. Said they both were good listeners and easy to talk to. He is too, so if they are like him they should be good. I told him I know they probably don't know much about RP, but I just need someone with an open mind that would be interested enought to read what I brought in and try to work with me. He felt these two would. We'll see!!!! hug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2001 Report Share Posted January 20, 2001 In a message dated 1/20/01 8:02:19 PM Pacific Standard Time, carmela999@... writes: << o to both and then decide if either one is a keeper... They are both up for the job, you have to interview them...lol >> Carmela, thanks, that was my intention. Why not.??? Figure I'll interview both. LOL If they don't want to work with me, fine, they are gone. I just hope that they aren't both good, then I'd have to make a decision and you know how hard that is for me.LOL Miss you, how are you doing on the minocin and other stuff? Sounds like things are getting better. Hope you have a great Sunday. Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2001 Report Share Posted January 20, 2001 Hi It's about time one of your doctors is doing something, as for the rheumy's... go to both and then decide if either one is a keeper... They are both up for the job, you have to interview them...lol take care and keep us posted luv ya Carmela ******************** > > Hi all, well we still have lights. Went to the > > neurologist today. He just > > kind of threw up his hands and said my problems were > > out of his league and is > > sending me to a neurosurgeon. Thinks now that it > > may be Chiari related. > > But.......he did give me the names of 2 rheumys that > > are close to me. One is > > a woman the other a man. Says they are both great > > to work with and easy to > > talk to. Won't hurt to check them out. So maybe I > > am making headway. > > Yeah!!!! > > > > Well, I'm going to chat now, can only stay a few > > minutes. Talk to you all > > tomorrow. > > > > Hugs > > _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2001 Report Share Posted January 29, 2001 JUdee, Judee, Judee....... This has to stop. No more rashes, No more fast heart beats. I insist that it stops NOW..... Am I going to have to send Heidi to your house with the pain killer????? Please take care of yourself. I worry about you too. Tell Your dad and Kay hello and let me know what the dr. says or does. HUgs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 Judee, gee... I hope the new or should I say old med works. Don't you just hate the wait and see game?? Thanks for the update, I sure appreciate it. Keep it up, I worry about you. Know that you are in my prayers and hope you are back to normal (whatever that is)LOL soon!! Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 , did you have any symptoms of diabetes? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 , Glad they were able to diagnose the diabetes. That is something you don't want to go untreated. What medication did they put you on to control your blood sugar? Did they put you on a diabetic diet? I'm also happy you were able to reduce the Pred. Higs, Sandy ----- Original Message ----- The big shocker was that I have diabetes. And after going over my medical recorders I have had it for a very long time. In '81 or '83 I was dx as glucose intolerant but nothing was done about it. Well they are doing something about it now. I'm on pills and insulin injections. And I'm feeling much better over all. Plus I have been able to reduce the pred by 5 mgs. So there is hope I can at least get back down to 10 mgs. Before any one bashes the doctors let me say something. I have been on and off pred since '85 do to sever bouts of bronicits and inner ear infections and what they thought was asthma. Pred can mask blood sugar levels and other diseases making it very difficult to find out what is really going on. My Endo doc recommended passing this tidbit along to all of you. When having any lab testing done, esp. fasting blood tests ask your doctor if you can safely do these tests without your medications. Once your blood is drawn take your meds. BUT ONLY IF YOUR DOCTOR SAYS IT IS OK! This is how they found some lovely new problems for me. I am not looking at this as a bad thing so please guys no I'm so sorry. This is a good thing! Really! They only other thing that could have possibly explained the problems I was having was neurological and that is a place I don't want to go. So smile and be happy for me. Thing found and are fixing one more problem. All my love R. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 Judee, Glad to hear things are getting better. No more scratching Huh??? Now don't go changing meds again okay...! Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 Judee, Good to hear that your rash is getting better. Was it an allergy to the other med? Hugs, Sandy ----- Original Message ----- My rash is going away since the changed the heart meds! I am doing fine. Love & prayers JudeeDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 , you are right with diabetes, you can take care of it and live a normal life, listen to your dr. and your body. As i said before My husband is a diabetic so if i can help in any way would be happy to do so. You may want to talk to dr. about an insulin pump they are great and help to regulate you much faster. My husband has been on the pump for atleast 5 years and is doing pretty good with it. Unless he gets sick like now, he has had the flu for a week so he is all out of normal. But when he gets to feeling better it will straighten itself out. best wishes and good luck and prayers to you dawn --- drutledge SkyfireRanch@...> wrote: > Good morning, I just wanted to update everyone. I > have been to Phoenix twice in the past 4 days to see > my endocrinologist. Needled to say I am tired but > fine. > They are still trying to figure out what is going on > with my thyroid. Leave it to me to have a difficult > problem. Monday I started on synthroid which none > of us think is going to work, but we are going to > try anyway. > The big shocker was that I have diabetes. And after > going over my medical recorders I have had it for a > very long time. In '81 or '83 I was dx as glucose > intolerant but nothing was done about it. > > Well they are doing something about it now. I'm on > pills and insulin injections. And I'm feeling much > better over all. Plus I have been able to reduce the > pred by 5 mgs. So there is hope I can at least get > back down to 10 mgs. > > Before any one bashes the doctors let me say > something. I have been on and off pred since '85 do > to sever bouts of bronicits and inner ear infections > and what they thought was asthma. Pred can mask > blood sugar levels and other diseases making it very > difficult to find out what is really going on. > > My Endo doc recommended passing this tidbit along to > all of you. When having any lab testing done, esp. > fasting blood tests ask your doctor if you can > safely do these tests without your medications. Once > your blood is drawn take your meds. BUT ONLY IF YOUR > DOCTOR SAYS IT IS OK! > > This is how they found some lovely new problems for > me. I am not looking at this as a bad thing so > please guys no I'm so sorry. This is a good thing! > Really! They only other thing that could have > possibly explained the problems I was having was > neurological and that is a place I don't want to go. > > So smile and be happy for me. Thing found and are > fixing one more problem. > > All my love > R. > __________________________________________________ Get personalized email addresses from Yahoo! Mail - only $35 a year! http://personal.mail.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2003 Report Share Posted June 28, 2003 , Good luck on Tues. with the infusion of IVIG. Hope this time goes better for you. Sounds like you have a good plan! Hope those carnitine levels come back with good news!!! Let us know when you are feeling up to it how the infusion went! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2003 Report Share Posted June 28, 2003 Thanks . They described how they felt almost exactly as you did. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2003 Report Share Posted June 28, 2003 , Best of luck on your 2nd infusion. I hope it goes much smoother than the first. I still carry the very vivid picture of your family trying to access relief for you after the first infusion in my mind. To familiar with the gripping feeling in the pit of the parents stomach they must have felt. Such efforts they extended. Fingers crossed for a non-event! Lee Mom to Red, Ada & Angel Lily ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 Dear : I believe Complex 2 diagnosis means that you have a deficiency in succinate dehydrogenase. Hope this helps! Mom to Zachary 3 yrs old SCAD Variant and Complex 1 4 1/2 yrs old and not tested Update Hi, I just wanted to give you all an update on things. I had my carnitine labs done on Mon. and Tues of this week to see if the carnitine is being reabsorbed into the mitchondria or not. I should have the results within 2 wks I think. Also I will be having my 2nd infusion of the IVIG on Tues. morning July 1st. I will be premedicated with a steriod and have a slower infusion rate over 5 hours. Hopefully that will eliminate the bad side effects I incurred the first time. Thanks for your thoughts and prayers. I'll let you know how it goes. The best vitamin for making a friend is B-1. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Lida, Congratulations!!! I am pre-op so I am prepared for the weight loss slow down. It will be really neat to be able to close the gown at the hospital. Some people take such little things for granite.....those little things will be big things for me!!! Patty RiversideLida Verner wrote: Well I am 16 months out. Still haven't reached goal. The weightloss is really slowing down. Since January I have lost 6 lbs. :::sigh::: I figure that I have a minimum of 50 lbs to go. On the positive side, I had a back xray today and for the first time in my life, I could close the gown in the back and not have my rear end hanging out. Lida http://www.candlelightdreams.comhttp://www.pbase.com/coffenut~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~One of the hardest lessons we ever have to master is accepting that all fear comes from within, however major are the external circumstances assaulting us. ~ unknown ~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~*~^~ Discover Yahoo! Use Yahoo! to plan a weekend, have fun online more. Check it out! 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.