Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 Dear Carmel, I was sad to read your e-mail. Mando tanti auguri a il tuo papa. Anch'io parlo l'italiano. I took my father to the Mayo Clinic last year. There is only one doctor there who is a specialist in MSA/Shy-Drager/dysautonomias. His name is Philip Low. Please do not take your father to Mayo without a DEFINITE appointment with Dr. Low. We made that mistake. We went all the way to Rochester, MN and were promised that, although we had no appointment with Dr. Low, we could see him if we asked. That's the first thing we asked and did not see him on that trip even though he was there. In fact, they had my father placed in the hypertension division since I had described blood pressure problems. There is apparently a big turf battle between the hypertension people and the neurology department at Mayo. Once my father started at the hypertension department, they wouldn't let him out of that loop to go to neurology. He ended up seeing a nephrologist (kidney expert, no relation to any problem he had) and, on that first trip, we never saw the right people. So, when you call to set up the appointment, tell them that your father must see Dr. Low in Neurology and that Neurology should be his starting point. If you start with Dr. Low, you'll save yourself another trip. Finally, we went back a few months later to see Dr. Low. It takes months to see Dr. Low. He was well worth the trip and had a lot of good advice and is absolutely brilliant. He is doing a lot of MSA research and has written many articles. Please insist on an appointment with Dr. Low. Ciao e molti auguri a il tuo padre ed a tutta la famiglia. Colette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 Dear Carmel, I was sad to read your e-mail. Mando tanti auguri a il tuo papa. Anch'io parlo l'italiano. I took my father to the Mayo Clinic last year. There is only one doctor there who is a specialist in MSA/Shy-Drager/dysautonomias. His name is Philip Low. Please do not take your father to Mayo without a DEFINITE appointment with Dr. Low. We made that mistake. We went all the way to Rochester, MN and were promised that, although we had no appointment with Dr. Low, we could see him if we asked. That's the first thing we asked and did not see him on that trip even though he was there. In fact, they had my father placed in the hypertension division since I had described blood pressure problems. There is apparently a big turf battle between the hypertension people and the neurology department at Mayo. Once my father started at the hypertension department, they wouldn't let him out of that loop to go to neurology. He ended up seeing a nephrologist (kidney expert, no relation to any problem he had) and, on that first trip, we never saw the right people. So, when you call to set up the appointment, tell them that your father must see Dr. Low in Neurology and that Neurology should be his starting point. If you start with Dr. Low, you'll save yourself another trip. Finally, we went back a few months later to see Dr. Low. It takes months to see Dr. Low. He was well worth the trip and had a lot of good advice and is absolutely brilliant. He is doing a lot of MSA research and has written many articles. Please insist on an appointment with Dr. Low. Ciao e molti auguri a il tuo padre ed a tutta la famiglia. Colette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 I'm from Spain, and my husband is dx MSA, can somebody give the telephone number of Dr. Philip Low of Mayo Clinic, please Mercedes Sampere -------Mensaje original------- De: shydrager Fecha: miércoles, 30 de octubre de 2002 03:32:03 A: shydrager Asunto: Re: Father just diagnosed Dear Carmel, I was sad to read your e-mail. Mando tanti auguri a il tuo papa. Anch'io parlo l'italiano. I took my father to the Mayo Clinic last year. There is only one doctor there who is a specialist in MSA/Shy-Drager/dysautonomias. His name is Philip Low. Please do not take your father to Mayo without a DEFINITE appointment with Dr. Low. We made that mistake. We went all the way to Rochester, MN and were promised that, although we had no appointment with Dr Low, we could see him if we asked. That's the first thing we asked and did not see him on that trip even though he was there. In fact, they had my father placed in the hypertension division since I had described blood pressure problems. There is apparently a big turf battle between the hypertension people and the neurology department at Mayo. Once my father started at the hypertension department, they wouldn't let him out of that loop to go to neurology. He ended up seeing a nephrologist (kidney expert, no relation to any problem he had) and, on that first trip, we never saw the right people. So, when you call to set up the appointment, tell them that your father must see Dr. Low in Neurology and that Neurology should be his starting point. If you start with Dr. Low, you'll save yourself another trip. Finally, we went back a few months later to see Dr. Low. It takes months to see Dr. Low. He was well worth the trip and had a lot of good advice and is absolutely brilliant. He is doing a lot of MSA research and has written many articles. Please insist on an appointment with Dr. Low. Ciao e molti auguri a il tuo padre ed a tutta la famiglia. Colette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 I'm from Spain, and my husband is dx MSA, can somebody give the telephone number of Dr. Philip Low of Mayo Clinic, please Mercedes Sampere -------Mensaje original------- De: shydrager Fecha: miércoles, 30 de octubre de 2002 03:32:03 A: shydrager Asunto: Re: Father just diagnosed Dear Carmel, I was sad to read your e-mail. Mando tanti auguri a il tuo papa. Anch'io parlo l'italiano. I took my father to the Mayo Clinic last year. There is only one doctor there who is a specialist in MSA/Shy-Drager/dysautonomias. His name is Philip Low. Please do not take your father to Mayo without a DEFINITE appointment with Dr. Low. We made that mistake. We went all the way to Rochester, MN and were promised that, although we had no appointment with Dr Low, we could see him if we asked. That's the first thing we asked and did not see him on that trip even though he was there. In fact, they had my father placed in the hypertension division since I had described blood pressure problems. There is apparently a big turf battle between the hypertension people and the neurology department at Mayo. Once my father started at the hypertension department, they wouldn't let him out of that loop to go to neurology. He ended up seeing a nephrologist (kidney expert, no relation to any problem he had) and, on that first trip, we never saw the right people. So, when you call to set up the appointment, tell them that your father must see Dr. Low in Neurology and that Neurology should be his starting point. If you start with Dr. Low, you'll save yourself another trip. Finally, we went back a few months later to see Dr. Low. It takes months to see Dr. Low. He was well worth the trip and had a lot of good advice and is absolutely brilliant. He is doing a lot of MSA research and has written many articles. Please insist on an appointment with Dr. Low. Ciao e molti auguri a il tuo padre ed a tutta la famiglia. Colette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Mercedes, You can reach Dr. Philip Low by calling . Since you're in Spain, you will have to dial the country code. Dr. Low's appointment line is . You can also reach him by e-mail at low.mayo.edu but don't expect a quick response. I sent him an e-mail last week and have not yet received an answer. But as a new patient, you may have to start with the main Mayo Clinic number. That number is . Make sure you get a referral from your doctor to Dr. Low in order to get an actual appointment with him. Colette (from DC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Mercedes, You can reach Dr. Philip Low by calling . Since you're in Spain, you will have to dial the country code. Dr. Low's appointment line is . You can also reach him by e-mail at low.mayo.edu but don't expect a quick response. I sent him an e-mail last week and have not yet received an answer. But as a new patient, you may have to start with the main Mayo Clinic number. That number is . Make sure you get a referral from your doctor to Dr. Low in order to get an actual appointment with him. Colette (from DC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Dear Colette Many thanks for your quick response, you have given Dr. Low e-mail but I don t know where to put the @, can you please send it back again. Do you know if there is at the moment any new treatment? My husband has been dx 6 years ago of Parkinson and just know they think is MSA, if there any thing you can tell me to help me please? My personal e-mail is msampere@... Best Regards Mercedes Sampere -------Mensaje original------- De: shydrager Fecha: miércoles, 30 de octubre de 2002 15:18:17 A: shydrager Asunto: Re: Father just diagnosed Mercedes, You can reach Dr. Philip Low by calling . Since you're in Spain, you will have to dial the country code. Dr. Low's appointment line is . You can also reach him by e-mail at low.mayo.edu but don't expect a quick response. I sent him an e-mail last week and have not yet received an answer. But as a new patient, you may have to start with the main Mayo Clinic number. That number is . Make sure you get a referral from your doctor to Dr. Low in order to get an actual appointment with him. Colette (from DC) 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 October 30, 2002 Report Share Posted October 30, 2002 Dear Colette Many thanks for your quick response, you have given Dr. Low e-mail but I don t know where to put the @, can you please send it back again. Do you know if there is at the moment any new treatment? My husband has been dx 6 years ago of Parkinson and just know they think is MSA, if there any thing you can tell me to help me please? My personal e-mail is msampere@... Best Regards Mercedes Sampere -------Mensaje original------- De: shydrager Fecha: miércoles, 30 de octubre de 2002 15:18:17 A: shydrager Asunto: Re: Father just diagnosed Mercedes, You can reach Dr. Philip Low by calling . Since you're in Spain, you will have to dial the country code. Dr. Low's appointment line is . You can also reach him by e-mail at low.mayo.edu but don't expect a quick response. I sent him an e-mail last week and have not yet received an answer. But as a new patient, you may have to start with the main Mayo Clinic number. That number is . Make sure you get a referral from your doctor to Dr. Low in order to get an actual appointment with him. Colette (from DC) 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 October 30, 2002 Report Share Posted October 30, 2002 Hi Colette and Carmel, I agree with you, Collette. MAKE SURE, when you go to Mayo that you have a SPECIFIC referral to neurology. Jeff went through the same thing, did not have a neuro consult, because Mayo determined that his symptoms were not conclusive to a neurological problem (this was almost 2 yrs ago, boy would they think different now!) He ended up going and starting in internal medicine. By the time they tested every orifice in his body and determined he needed a neuro consult, he had to come home or risk losing his job. We ended up going to Baylor in Houston and Dr. Jankovic provided the diagnosis. Best wishes to you, M. Subject: Re: Father just diagnosed Dear Carmel, I was sad to read your e-mail. Mando tanti auguri a il tuo papa. Anch'io parlo l'italiano. I took my father to the Mayo Clinic last year. There is only one doctor there who is a specialist in MSA/Shy-Drager/dysautonomias. His name is Philip Low. Please do not take your father to Mayo without a DEFINITE appointment with Dr. Low. We made that mistake. We went all the way to Rochester, MN and were promised that, although we had no appointment with Dr. Low, we could see him if we asked. That's the first thing we asked and did not see him on that trip even though he was there. In fact, they had my father placed in the hypertension division since I had described blood pressure problems. There is apparently a big turf battle between the hypertension people and the neurology department at Mayo. Once my father started at the hypertension department, they wouldn't let him out of that loop to go to neurology. He ended up seeing a nephrologist (kidney expert, no relation to any problem he had) and, on that first trip, we never saw the right people. So, when you call to set up the appointment, tell them that your father must see Dr. Low in Neurology and that Neurology should be his starting point. If you start with Dr. Low, you'll save yourself another trip. Finally, we went back a few months later to see Dr. Low. It takes months to see Dr. Low. He was well worth the trip and had a lot of good advice and is absolutely brilliant. He is doing a lot of MSA research and has written many articles. Please insist on an appointment with Dr. Low. Ciao e molti auguri a il tuo padre ed a tutta la famiglia. Colette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Hi Colette and Carmel, I agree with you, Collette. MAKE SURE, when you go to Mayo that you have a SPECIFIC referral to neurology. Jeff went through the same thing, did not have a neuro consult, because Mayo determined that his symptoms were not conclusive to a neurological problem (this was almost 2 yrs ago, boy would they think different now!) He ended up going and starting in internal medicine. By the time they tested every orifice in his body and determined he needed a neuro consult, he had to come home or risk losing his job. We ended up going to Baylor in Houston and Dr. Jankovic provided the diagnosis. Best wishes to you, M. Subject: Re: Father just diagnosed Dear Carmel, I was sad to read your e-mail. Mando tanti auguri a il tuo papa. Anch'io parlo l'italiano. I took my father to the Mayo Clinic last year. There is only one doctor there who is a specialist in MSA/Shy-Drager/dysautonomias. His name is Philip Low. Please do not take your father to Mayo without a DEFINITE appointment with Dr. Low. We made that mistake. We went all the way to Rochester, MN and were promised that, although we had no appointment with Dr. Low, we could see him if we asked. That's the first thing we asked and did not see him on that trip even though he was there. In fact, they had my father placed in the hypertension division since I had described blood pressure problems. There is apparently a big turf battle between the hypertension people and the neurology department at Mayo. Once my father started at the hypertension department, they wouldn't let him out of that loop to go to neurology. He ended up seeing a nephrologist (kidney expert, no relation to any problem he had) and, on that first trip, we never saw the right people. So, when you call to set up the appointment, tell them that your father must see Dr. Low in Neurology and that Neurology should be his starting point. If you start with Dr. Low, you'll save yourself another trip. Finally, we went back a few months later to see Dr. Low. It takes months to see Dr. Low. He was well worth the trip and had a lot of good advice and is absolutely brilliant. He is doing a lot of MSA research and has written many articles. Please insist on an appointment with Dr. Low. Ciao e molti auguri a il tuo padre ed a tutta la famiglia. Colette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Hello everyone, thank you all so much for your kind words. Now that I have had time to regroup -- and after having a better discussion with my sister -- she said that the specialist was unsure if it was MSA or Progressive SupraNuclear Palsy, but leaning more towards the PSP. Does anyone know if these are very different? Do you know if Dr. Low is also a specialist in PSP? We did talk to my father about taking him to Mayo -- but we haven't really explained why. I just think he would lose all hope -- thank you again, Carmel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Hello everyone, thank you all so much for your kind words. Now that I have had time to regroup -- and after having a better discussion with my sister -- she said that the specialist was unsure if it was MSA or Progressive SupraNuclear Palsy, but leaning more towards the PSP. Does anyone know if these are very different? Do you know if Dr. Low is also a specialist in PSP? We did talk to my father about taking him to Mayo -- but we haven't really explained why. I just think he would lose all hope -- thank you again, Carmel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 HI Carmel, While MSA is degenerative, and ultimately fatal, there is much that can be done to alleviate symptoms and give patients a fairly decent quality of life. I know that for Jeff, not knowing what was wrong was worse than knowing. For a while he really thought he was crazy, and some of the doctors actually implied that as well. I guess what I'm saying is that it may be better for your father to know the truth than to keep him in the dark about it. But of course, you know his personality best and how he will react. I will keep you in my prayers. M. CARMEL WROTE: Subject: Re: Father just Diagnosed Hello everyone, thank you all so much for your kind words. Now that I have had time to regroup -- and after having a better discussion with my sister -- she said that the specialist was unsure if it was MSA or Progressive SupraNuclear Palsy, but leaning more towards the PSP. Does anyone know if these are very different? Do you know if Dr. Low is also a specialist in PSP? We did talk to my father about taking him to Mayo -- but we haven't really explained why. I just think he would lose all hope -- thank you again, Carmel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 HI Carmel, While MSA is degenerative, and ultimately fatal, there is much that can be done to alleviate symptoms and give patients a fairly decent quality of life. I know that for Jeff, not knowing what was wrong was worse than knowing. For a while he really thought he was crazy, and some of the doctors actually implied that as well. I guess what I'm saying is that it may be better for your father to know the truth than to keep him in the dark about it. But of course, you know his personality best and how he will react. I will keep you in my prayers. M. CARMEL WROTE: Subject: Re: Father just Diagnosed Hello everyone, thank you all so much for your kind words. Now that I have had time to regroup -- and after having a better discussion with my sister -- she said that the specialist was unsure if it was MSA or Progressive SupraNuclear Palsy, but leaning more towards the PSP. Does anyone know if these are very different? Do you know if Dr. Low is also a specialist in PSP? We did talk to my father about taking him to Mayo -- but we haven't really explained why. I just think he would lose all hope -- thank you again, Carmel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 Hi Carmel, Welcome to our list. No, PSP and MSA are not much different, except for the cause which they think is two different proteins. Treatment is the same - work on treating the symptoms. Yes, Dr. Low knows about both as do others around the USA. I personally would not bother with the expense of taking him there unless you thought it did not match either. If you tell us his symptoms and meds, we may be able to help you decide what MAY help some symptoms. Work with your doctor by keeping a log of when he takes his meds, what his daily BP and temperature are, when his symptoms get worse, etc. Then summarize all of those notes into a simple explanation (about a half page summary) with average temperature - high & low temp - same with BP and any new symptoms, what helps symptoms, etc. Take care, Bill Werre fionashrekca wrote: >Hello everyone, thank you all so much for your kind words. > >Now that I have had time to regroup -- and after having a better >discussion with my sister -- she said that the specialist was unsure >if it was MSA or Progressive SupraNuclear Palsy, but leaning more >towards the PSP. Does anyone know if these are very different? Do >you know if Dr. Low is also a specialist in PSP? We did talk to my >father about taking him to Mayo -- but we haven't really explained >why. I just think he would lose all hope -- thank you again, >Carmel > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 Hi Carmel, Welcome to our list. No, PSP and MSA are not much different, except for the cause which they think is two different proteins. Treatment is the same - work on treating the symptoms. Yes, Dr. Low knows about both as do others around the USA. I personally would not bother with the expense of taking him there unless you thought it did not match either. If you tell us his symptoms and meds, we may be able to help you decide what MAY help some symptoms. Work with your doctor by keeping a log of when he takes his meds, what his daily BP and temperature are, when his symptoms get worse, etc. Then summarize all of those notes into a simple explanation (about a half page summary) with average temperature - high & low temp - same with BP and any new symptoms, what helps symptoms, etc. Take care, Bill Werre fionashrekca wrote: >Hello everyone, thank you all so much for your kind words. > >Now that I have had time to regroup -- and after having a better >discussion with my sister -- she said that the specialist was unsure >if it was MSA or Progressive SupraNuclear Palsy, but leaning more >towards the PSP. Does anyone know if these are very different? Do >you know if Dr. Low is also a specialist in PSP? We did talk to my >father about taking him to Mayo -- but we haven't really explained >why. I just think he would lose all hope -- thank you again, >Carmel > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 Hi Fiona, Where in Canada are you? There are a couple doctors knowledgeable about MSA and PSP in Montreal and some in Toronto and London. There is one page written in Italian at the European MSA Study Group website. See: http://www.emsa-sg.org and click on Italy. Take care, Pam Halifax, NS Father just diagnosed > Hello everyone, I am new to this site as I just found out yesterday > that my father has MSA. Just to give a brief history my father has > been suffering from weakness in the legs for about 1.5 years, he has > rigidity and macular degeneration. He has fallen a few times in the > past few months. This has been very heartbreaking for us because, > just like all of your relatives, I am sure -- my father was a very > active man. My sister and I have been taking care of all his medical > appointments and translating for him (he is an Italian immigrant). > We are looking at bringing him to the Mayo Clinic to confirm the > diagnosis -- we are in Canada. > My question is -- who at the Rochester Mayo clinic should we see and > how do you tell your aging parent that this is happening to him? > > We are just devastated and thank you for any suggestions, advise, > comments. . . . . > Carmel > > > > 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 October 31, 2002 Report Share Posted October 31, 2002 Hi Fiona, Where in Canada are you? There are a couple doctors knowledgeable about MSA and PSP in Montreal and some in Toronto and London. There is one page written in Italian at the European MSA Study Group website. See: http://www.emsa-sg.org and click on Italy. Take care, Pam Halifax, NS Father just diagnosed > Hello everyone, I am new to this site as I just found out yesterday > that my father has MSA. Just to give a brief history my father has > been suffering from weakness in the legs for about 1.5 years, he has > rigidity and macular degeneration. He has fallen a few times in the > past few months. This has been very heartbreaking for us because, > just like all of your relatives, I am sure -- my father was a very > active man. My sister and I have been taking care of all his medical > appointments and translating for him (he is an Italian immigrant). > We are looking at bringing him to the Mayo Clinic to confirm the > diagnosis -- we are in Canada. > My question is -- who at the Rochester Mayo clinic should we see and > how do you tell your aging parent that this is happening to him? > > We are just devastated and thank you for any suggestions, advise, > comments. . . . . > Carmel > > > > 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...
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