Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 , here - I've been noticing the questions regarding memory loss. I am one who believes CMT does not cause memory loss or confusion, but let me add a few thoughts to this. Many of us with CMT take a variety of perscribed medications. One many of us take is amitriptyline and drugs in that group. That is a great drug that contributes to memory loss and etc. Also the higher the dosage of that drug, the more likely is it's interference with memory. To avoid that problem, I take it at bed time. Remember : Every person reacts to any drug differently. With amitripyline, some become forgetful (me ) while or whoever next door may not One more comment on the amitriptyline is can also be a help for those who can't sleep. It's an antidepressent with many uses, Last comment, amitriptyline is a drug that must be used with caution. It's NOT one that you by yourself can " play " with to find the best dosage. Only your doctor can do this. It's a very potent drug. Actually, my last sentence is true of any drug. My memory is OK when I take it at bedtime and weighing the " good " against the " bad " in regard to amitriptyline, it is my choice to take it. The choices are always our own. Now, more about memory loss. Another warning that involves amitriptyline or groups of drugs of it's type is that often other meds are used in conjunction with such drugs, drugs such as valium or xanax or other types of that group. These dugs mixed together will intensify the affects. The doctor generally knows this and usually thats OK. Often after a week or two that can become less. If you're not a doctor or pharmacist, always check first with the doctor, ALWAYS make sure your doctor knows EVERY drug you take because many of us with CMT have several doctors. Then double check with your pharmacist. Mistakes are made by every human being. That's why I check, double check and read what I can, because in the end, I'd be the one to suffer, if a mistake were made. Lastly, memory disturbances are often a side effect of depression. A bad or sad day is not depression. But continued bad/sad days mixed with no desire to do the things that usually give you pleasure is. Depression is a very real condition and it MUST be taken seriously. You need to find a psychiatrist or psychologist. There is no shame in getting help, the only " shame " would be to ignore it and thereby, miss out on the joys life brings. My theory is : 1st - make sure you well ( other than the CMT or that there'd been no advance you'd not been aware of ) by checking with your primary care doctor. If you check out well, go to a psychiatrist or psychologist. What I's saying in this post is memory loss is NOT a direct effect of CMT, but your CMT can cause one to experience depression, along with a whole lot of other negative thoughts which can cause depression and problems with memory. It'd be comforting to say all our problems were caused by CMT. That reason would be so comforting, but so untrue. We have CMT but, unfortunately we are still subject to any disease any others without CMT can get. The flu's bad this year if a friend gets it, that awful but if we get it, it's it will be 10 times worse, according to my Neurologist. Use caution! Didn't mean to go on so long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 Hi . Peggie here. I beg to disagree with you, but the doctors DO NOT ALWAYS KNOW BEST!!!! If I had done what the doctor told me to do with elavil - I would be dead now. I was the one that had to cut my own dosage down, because she wouldn't - and started me on 50mg (this was the MDA Neuro) (with her own private practice) and wanted me up to 150 mg withing 3 months. I have had two different doctors give me toxic medication that parallezed me twice - and they knew I had CMT. I had another doctor do my " ankle fusion " incorrectly and after 4 months of pain got to have it done again (by a different doctor!). Like many of us - I have been to MANY doctors, and could count on one hand any of them I would trust for anything....... Yes, we must be aware and check our own medications - however, WHO CHECKS ON THE DOCTORS? I think you are very wrong to say to have you doctor decide your dosage. We know much better then they do!!! Have a good day Re: memory notes > From: harmac1@... > > , here - I've been noticing the questions regarding memory loss. I > am one who believes CMT does not cause memory loss or confusion, but let > me add a few thoughts to this. Many of us with CMT take a variety of > perscribed medications. One many of us take is amitriptyline and drugs > in that group. That is a great drug that contributes to memory loss and > etc. Also the higher the dosage of that drug, the more likely is it's > interference with memory. To avoid that problem, I take it at bed time. > Remember : Every person reacts to any drug differently. With > amitripyline, some become forgetful (me ) while or whoever next > door may not One more comment on the amitriptyline is can also be a > help for those who can't sleep. It's an antidepressent with many uses, > Last comment, amitriptyline is a drug that must be used with caution. > It's NOT one that you by yourself can " play " with to find the best > dosage. Only your doctor can do this. It's a very potent drug. > Actually, my last sentence is > true of any drug. My memory is OK when I take it at bedtime and > weighing the " good " against the " bad " in regard to amitriptyline, it is > my choice to take it. The choices are always our own. > Now, more about memory loss. Another warning that involves > amitriptyline or groups of drugs of it's type is that often other meds > are used in conjunction with such drugs, drugs such as valium or xanax > or other types of that group. > These dugs mixed together will intensify the affects. The doctor > generally knows this and usually thats OK. Often after a week or two > that can become less. If you're not a doctor or pharmacist, always > check first with the doctor, ALWAYS make sure your doctor knows EVERY > drug you take because many of us with CMT have several doctors. Then > double check with your pharmacist. Mistakes are made by every human > being. That's why I check, double check and read what I can, because in > the end, I'd be the one to suffer, if a mistake were made. > Lastly, memory disturbances are often a side effect of depression. > A bad or sad day is not depression. But continued bad/sad days mixed > with no desire to do the things that usually give you pleasure is. > Depression is a very real condition and it MUST be taken seriously. You > need to find a psychiatrist or psychologist. There is no shame in > getting help, the only " shame " would be to ignore it and thereby, miss > out on the joys life brings. My theory is : 1st - make sure you well ( > other than the CMT or that there'd been no advance you'd not been aware > of ) by checking with your primary care doctor. If you check out well, > go to a psychiatrist or psychologist. > What I's saying in this post is memory loss is NOT a direct effect > of CMT, but your CMT can cause one to experience depression, along with > a whole lot of other negative thoughts which can cause depression and > problems with memory. It'd be comforting to say all our problems were > caused by CMT. That reason would be so comforting, but so untrue. We > have CMT but, unfortunately we are still subject to any disease any > others without CMT can get. The flu's bad this year if a friend gets > it, that awful but if we get it, it's it will be 10 times worse, > according to my Neurologist. Use caution! Didn't mean to go on so > long. > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 Hi . Peggie here. I beg to disagree with you, but the doctors DO NOT ALWAYS KNOW BEST!!!! If I had done what the doctor told me to do with elavil - I would be dead now. I was the one that had to cut my own dosage down, because she wouldn't - and started me on 50mg (this was the MDA Neuro) (with her own private practice) and wanted me up to 150 mg withing 3 months. I have had two different doctors give me toxic medication that parallezed me twice - and they knew I had CMT. I had another doctor do my " ankle fusion " incorrectly and after 4 months of pain got to have it done again (by a different doctor!). Like many of us - I have been to MANY doctors, and could count on one hand any of them I would trust for anything....... Yes, we must be aware and check our own medications - however, WHO CHECKS ON THE DOCTORS? I think you are very wrong to say to have you doctor decide your dosage. We know much better then they do!!! Have a good day Re: memory notes > From: harmac1@... > > , here - I've been noticing the questions regarding memory loss. I > am one who believes CMT does not cause memory loss or confusion, but let > me add a few thoughts to this. Many of us with CMT take a variety of > perscribed medications. One many of us take is amitriptyline and drugs > in that group. That is a great drug that contributes to memory loss and > etc. Also the higher the dosage of that drug, the more likely is it's > interference with memory. To avoid that problem, I take it at bed time. > Remember : Every person reacts to any drug differently. With > amitripyline, some become forgetful (me ) while or whoever next > door may not One more comment on the amitriptyline is can also be a > help for those who can't sleep. It's an antidepressent with many uses, > Last comment, amitriptyline is a drug that must be used with caution. > It's NOT one that you by yourself can " play " with to find the best > dosage. Only your doctor can do this. It's a very potent drug. > Actually, my last sentence is > true of any drug. My memory is OK when I take it at bedtime and > weighing the " good " against the " bad " in regard to amitriptyline, it is > my choice to take it. The choices are always our own. > Now, more about memory loss. Another warning that involves > amitriptyline or groups of drugs of it's type is that often other meds > are used in conjunction with such drugs, drugs such as valium or xanax > or other types of that group. > These dugs mixed together will intensify the affects. The doctor > generally knows this and usually thats OK. Often after a week or two > that can become less. If you're not a doctor or pharmacist, always > check first with the doctor, ALWAYS make sure your doctor knows EVERY > drug you take because many of us with CMT have several doctors. Then > double check with your pharmacist. Mistakes are made by every human > being. That's why I check, double check and read what I can, because in > the end, I'd be the one to suffer, if a mistake were made. > Lastly, memory disturbances are often a side effect of depression. > A bad or sad day is not depression. But continued bad/sad days mixed > with no desire to do the things that usually give you pleasure is. > Depression is a very real condition and it MUST be taken seriously. You > need to find a psychiatrist or psychologist. There is no shame in > getting help, the only " shame " would be to ignore it and thereby, miss > out on the joys life brings. My theory is : 1st - make sure you well ( > other than the CMT or that there'd been no advance you'd not been aware > of ) by checking with your primary care doctor. If you check out well, > go to a psychiatrist or psychologist. > What I's saying in this post is memory loss is NOT a direct effect > of CMT, but your CMT can cause one to experience depression, along with > a whole lot of other negative thoughts which can cause depression and > problems with memory. It'd be comforting to say all our problems were > caused by CMT. That reason would be so comforting, but so untrue. We > have CMT but, unfortunately we are still subject to any disease any > others without CMT can get. The flu's bad this year if a friend gets > it, that awful but if we get it, it's it will be 10 times worse, > according to my Neurologist. Use caution! Didn't mean to go on so > long. > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Dear Peggie. here. Peggie, you must NEVER worry ( " beg to disagree " ) with me. I make many mistakes and would prefer to know. For those who may not know what we're talking about I'll fill you in, briefly. Yesterday, I spoke about two drugs that have helped me. One was neurontin, the other, the one I believe Peggie is talking about was amitriptyline. Peggie, whenever I make any comment concerning any drug, I ALWAYS say check with your doctor because, to NOT say that, I could be, in a wild stretch of the imagination, practicing medicine, so in our litigious society one can not be too careful. However to be more clear, I would never tell anyone to do anything their doctor didn't know about, because that on my part, would be foolish. Not that I care about disagreeing with a (or many) doctor, but what if, God forbid, I told someone to do something without their doctors OK and perhaps didn't know the whole story ( heart conditions, cancer. drug intolerences or allergies ) the list is endless. The second thing you questioned, Peggie is who checks on the doctors? Good question. Most mistakes are simply swept under the rug or if they are actually sued, it's usually settled out of court. Personally, Peggie, as a group, I dislike doctors. That's why I feel one opinion is not enough, maybe even a second, choose who seems good and is willing to do an interview, though you will probably be billed. If you know any of his/her patients, question them. Then with work and research and a dash of luck, you may have found someone you can trust and talk with about your medical concerns. Just because there are a lot of diplomas on the wall, means nothing. However, with an increase in modern tecnology, on your computor, you can do a lot of checking yourself. Peggie, like you, I've had botched surgeries and prescribed meds I couldn't tolerate. One very personal problem happened to a woman close to my heart, over the holidays. She'd been dealing with what her doctor started calling was starting to call " chronic " pneumonia - I don't think if there is a chronic pneumonia, some of you might know. He'd (doc) been treating her in her home thru Home Health with antibiotics and some sort of cortisone. (SP?) One night, her heart was racing. She said she 'd gone to the ER because she felt she was dying. They just said a few kind words to her and sent her home. In the ER doc's reports he probably added it to another hysterical female. The following day she consulted her regular doc and told him she just couldn't stand the cortisone dervivitive. She said she would never take it again. He was angry, and said if he prescribed it, she'd take it or find a different doctor! Then he walked out, slamming the door behind him. Two nights later, she returned to the ER in the middle of a heart attack. She spent over a week and 1/2 in Coronary Intensive Care. Many tests and etc. By the way the cardiologist got rid of the cortisone. She was home for around a week when she was rushed back to the hospital and had an angiogram (SP?) where a couple bockages were opened. This last Monday she started Cardiac Rehab. She's a dear friend (age 51) and althought not in the same city,(her) town (me) I talk with her daily. By the way I know nothing about the heart or how it's treated, new to me. She'll be seen mostly by the cardiologist than her GP whom she'll change once she feels stronger. Well, Peggie, such a long letter from me, an old windbag since birth, to a short question. I guess my main point is : Doctors aren't Gods - though too many would disagree. And I AGREE with you and I must try to use more caution with my words. Peggie and to anyone else who wandered thru this, I DO know less is more, at least this year, and I'll work on trying to condense my words and thoughts. Peggie, trust your instincts. Have a wonderful day as I hope to because it is still sunny & mild. Thinking of you. Quote Link to comment Share on other sites More sharing options...
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