Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 My first neurologist was " ?????? and didn't attempt to find out what was causing my problems, he simply told me I had Parkinsons and started stuffing Parkinsons meds down me until I was getting worse by the minute and all he did was prescribe another poison pill. I ended up in ER twice due to reactions to the meds. If it hadn't been for the concern my ortthopaedic doctor I would have ended up like my cousin " DEAD " . The neuromuscular doctor that my orthopaedic docotor consulted with before firing my previous neurologist and hiring my current neuromuscular doctor, all while I was in Washington state trying to recover from the sudden death of my 48 year old son. My current doctor agreed wholeheartedly that I had do not now and never did have Parkinsons he is very caring and curious (to say the least), he ran a battery of tests that the only thing he really understood was that I have a severe B-12 deficiency and he has referred me to a hematologist/genetic specialist. Like you said some perhaps are " geeks " and others are bery intelligent and caring also I go in again today for more testing which I hope will be of more value and closer to a specific diagnosis other than s Mitochondrial Dysfunction or possible as my neurosurgeon says a possbility Mitochondrial Myopathy. I have been hearing possible a lot since I started down this long, bumpy road that is full of " big potholes " . Dolores venomvw umhkyfan@...> wrote: It sounds like your visit was highly productive. I would recommend however, that you apply for SS now. Do not wait ! It takes well over a year for it to be approved - IF you can get it, and it's retro- active. I'm waiting for my appeal and the appeals process alone has taken almost 2 years without a court date. As for the doc, I had to laugh a couple of times while I was reading your post. Sounds so familiar. I work with two 1st yr med students in a program for chronically ill patients like myself and they got to hang out with me for a neurology visit one day. I think it was a real eye-opener about being on the other side, plus, one of them said " what is it about neurologists that they're all geeks ! " I cracked up. My neuromuscular doc is exactly how you described Dr. Sims. She is highly intelligent but doesn't always use the best tact when making statements and forgets that she is talking with a patient (living and breathing ), not the microscope. I think some docs have a lot of trouble separating the people part of medicine with the lab part. They're fantastic scientists and mediocre conversationalists. You seem to have the right attitude about dealing with her. Use her for knowlege and not for the " warm and fuzzies. " Best of luck and I hope you get the answers you seek from your biopsy ! Bug 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 April 26, 2005 Report Share Posted April 26, 2005 Delores I am glad on what hopefully will be the right road. Just having a doc who is saying possible is better than hearing that " it is all in your head " . My journey for a diagnosis took 15 years. I sure hope your journey is much shorter. laurie > > My first neurologist was " ?????? and didn't attempt to find out what was > causing my problems, he simply told me I had Parkinsons and started stuffing > Parkinsons meds down me until I was getting worse by the minute and all he > did was prescribe another poison pill. I ended up in ER twice due to > reactions to the meds. If it hadn't been for the concern my ortthopaedic > doctor I would have ended up like my cousin " DEAD " . The neuromuscular > doctor that my orthopaedic docotor consulted with before firing my previous > neurologist and hiring my current neuromuscular doctor, all while I was in > Washington state trying to recover from the sudden > death of my 48 year old son. My current doctor agreed wholeheartedly that I > had do not now and never did have Parkinsons he is very caring and curious > (to say the least), he ran a battery of tests that the only thing he really > understood was that I have a severe B-12 deficiency and he has referred me > to a hematologist/genetic specialist. Like you said some perhaps are > " geeks " and others are bery intelligent and caring also I go in again today > for more testing which I hope will be of more value and closer to a specific > diagnosis other than s Mitochondrial Dysfunction or possible as my > neurosurgeon says a possbility Mitochondrial Myopathy. I have been hearing > possible a lot since I started down this long, bumpy road that is full of > " big potholes " . Dolores > > > venomvw umhkyfan@...> wrote: > > It sounds like your visit was highly productive. I would recommend > however, that you apply for SS now. Do not wait ! It takes well over > a year for it to be approved - IF you can get it, and it's retro- > active. I'm waiting for my appeal and the appeals process alone has > taken almost 2 years without a court date. > > As for the doc, I had to laugh a couple of times while I was reading > your post. Sounds so familiar. I work with two 1st yr med students > in a program for chronically ill patients like myself and they got to > hang out with me for a neurology visit one day. I think it was a real > eye-opener about being on the other side, plus, one of them said " what > is it about neurologists that they're all geeks ! " I cracked up. My > neuromuscular doc is exactly how you described Dr. Sims. She is > highly intelligent but doesn't always use the best tact when making > statements and forgets that she is talking with a patient (living and > breathing ), not the microscope. I think some docs have a lot of > trouble separating the people part of medicine with the lab part. > They're fantastic scientists and mediocre conversationalists. You > seem to have the right attitude about dealing with her. Use her for > knowlege and not for the " warm and fuzzies. " > > Best of luck and I hope you get the answers you seek from your biopsy ! > > Bug > > > > > > > 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 April 26, 2005 Report Share Posted April 26, 2005 Bug, thanks for the humor. I've met quite a few neurologists like that! My neuro happens to be board-certified in both psychiatry and neurology, though he only practices neurology. It's an interesting combination and gives him a very person-oriented perspective with patients. The first time I saw him it was more like talking to a psychiatrist -- I think. (I've never seen one.) He asked so many questions about my life in general and who I am. He thinks beyond the disease. Also has a great sense of humor. It's interesting that doctors seem to stereotype each other based on specialty, and I'm sure there's some truth to it. Pediatricians, they say, are most likely to go out of their way to help patients. Surgeons are most likely to be arrogant and cold. I'm also told pediatricians don't like a lot of " medicalese " even at professional gatherings and actually prefer English! Their eyes glaze over with words like " phenotype. " (A geneticist told me this.) In my experience, the physicians attached to academic institutions are more likely to have poor people skills. Many are there primarily for the research opportunities, not the interaction with patients. But there are plenty of exceptions. Take care, Barbara _____ From: [mailto: ] On Behalf Of venomvw Sent: Tuesday, April 26, 2005 7:28 AM To: Subject: Re: Dr. Sims MGH As for the doc, I had to laugh a couple of times while I was reading your post. Sounds so familiar. I work with two 1st yr med students in a program for chronically ill patients like myself and they got to hang out with me for a neurology visit one day. I think it was a real eye-opener about being on the other side, plus, one of them said " what is it about neurologists that they're all geeks ! " I cracked up. My neuromuscular doc is exactly how you described Dr. Sims. She is highly intelligent but doesn't always use the best tact when making statements and forgets that she is talking with a patient (living and breathing ), not the microscope. I think some docs have a lot of trouble separating the people part of medicine with the lab part. They're fantastic scientists and mediocre conversationalists. You seem to have the right attitude about dealing with her. Use her for knowlege and not for the " warm and fuzzies. " Best of luck and I hope you get the answers you seek from your biopsy ! Bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 I'm still struggling along. Gee, I hope they get me figured in less time as they did you considering the fact that I am already 69 (ha). I am very grateful that Dr. Baker followed his belief that I didn't have Parkinsons and kept searching for an answer of some kind for me. Dolores Laurie Fitzgerald laurie.fitzgerald@...> wrote:Delores I am glad on what hopefully will be the right road. Just having a doc who is saying possible is better than hearing that " it is all in your head " . My journey for a diagnosis took 15 years. I sure hope your journey is much shorter. laurie > > My first neurologist was " ?????? and didn't attempt to find out what was > causing my problems, he simply told me I had Parkinsons and started stuffing > Parkinsons meds down me until I was getting worse by the minute and all he > did was prescribe another poison pill. I ended up in ER twice due to > reactions to the meds. If it hadn't been for the concern my ortthopaedic > doctor I would have ended up like my cousin " DEAD " . The neuromuscular > doctor that my orthopaedic docotor consulted with before firing my previous > neurologist and hiring my current neuromuscular doctor, all while I was in > Washington state trying to recover from the sudden > death of my 48 year old son. My current doctor agreed wholeheartedly that I > had do not now and never did have Parkinsons he is very caring and curious > (to say the least), he ran a battery of tests that the only thing he really > understood was that I have a severe B-12 deficiency and he has referred me > to a hematologist/genetic specialist. Like you said some perhaps are > " geeks " and others are bery intelligent and caring also I go in again today > for more testing which I hope will be of more value and closer to a specific > diagnosis other than s Mitochondrial Dysfunction or possible as my > neurosurgeon says a possbility Mitochondrial Myopathy. I have been hearing > possible a lot since I started down this long, bumpy road that is full of > " big potholes " . Dolores > > > venomvw umhkyfan@...> wrote: > > It sounds like your visit was highly productive. I would recommend > however, that you apply for SS now. Do not wait ! It takes well over > a year for it to be approved - IF you can get it, and it's retro- > active. I'm waiting for my appeal and the appeals process alone has > taken almost 2 years without a court date. > > As for the doc, I had to laugh a couple of times while I was reading > your post. Sounds so familiar. I work with two 1st yr med students > in a program for chronically ill patients like myself and they got to > hang out with me for a neurology visit one day. I think it was a real > eye-opener about being on the other side, plus, one of them said " what > is it about neurologists that they're all geeks ! " I cracked up. My > neuromuscular doc is exactly how you described Dr. Sims. She is > highly intelligent but doesn't always use the best tact when making > statements and forgets that she is talking with a patient (living and > breathing ), not the microscope. I think some docs have a lot of > trouble separating the people part of medicine with the lab part. > They're fantastic scientists and mediocre conversationalists. You > seem to have the right attitude about dealing with her. Use her for > knowlege and not for the " warm and fuzzies. " > > Best of luck and I hope you get the answers you seek from your biopsy ! > > Bug > > > > > > > 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 April 26, 2005 Report Share Posted April 26, 2005 Hi Barbara, I also am sorry that I didn't pick up on the fact that you had a Gamma Knife done. I have sort of been out of the loop so to speak with my surgery and other health concerns (which are minor compared to others). I know for a fact that a Gamma Knife is no fun at all. I only thank the Good Lord that my husband was still with me as I really needed a strong hand to apply the ice packs when my eyes were swollen shut from the affects of it. I do so hope things are better for you now. I just got home from haveing a CT scan done, I hadn't been there since January 14, 2002 when my husband was there for a sonogram and coded on them. I guess my blood pressure was up pretty high when I told the nurse why I thought it was high, she said she would never forget that day so she is sure it had a tramatic effect on me. She was very kind, she even walked upstairs and waited until the Lift came to pick me up. Again I am sorry I missed the post about your Gamma Knife. Dolores Barbara Seaman wheatchild@...> wrote:Bug, thanks for the humor. I've met quite a few neurologists like that! My neuro happens to be board-certified in both psychiatry and neurology, though he only practices neurology. It's an interesting combination and gives him a very person-oriented perspective with patients. The first time I saw him it was more like talking to a psychiatrist -- I think. (I've never seen one.) He asked so many questions about my life in general and who I am. He thinks beyond the disease. Also has a great sense of humor. It's interesting that doctors seem to stereotype each other based on specialty, and I'm sure there's some truth to it. Pediatricians, they say, are most likely to go out of their way to help patients. Surgeons are most likely to be arrogant and cold. I'm also told pediatricians don't like a lot of " medicalese " even at professional gatherings and actually prefer English! Their eyes glaze over with words like " phenotype. " (A geneticist told me this.) In my experience, the physicians attached to academic institutions are more likely to have poor people skills. Many are there primarily for the research opportunities, not the interaction with patients. But there are plenty of exceptions. Take care, Barbara _____ From: [mailto: ] On Behalf Of venomvw Sent: Tuesday, April 26, 2005 7:28 AM To: Subject: Re: Dr. Sims MGH As for the doc, I had to laugh a couple of times while I was reading your post. Sounds so familiar. I work with two 1st yr med students in a program for chronically ill patients like myself and they got to hang out with me for a neurology visit one day. I think it was a real eye-opener about being on the other side, plus, one of them said " what is it about neurologists that they're all geeks ! " I cracked up. My neuromuscular doc is exactly how you described Dr. Sims. She is highly intelligent but doesn't always use the best tact when making statements and forgets that she is talking with a patient (living and breathing ), not the microscope. I think some docs have a lot of trouble separating the people part of medicine with the lab part. They're fantastic scientists and mediocre conversationalists. You seem to have the right attitude about dealing with her. Use her for knowlege and not for the " warm and fuzzies. " Best of luck and I hope you get the answers you seek from your biopsy ! Bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 No problem, Dolores. There are lots of folks in this group and it's hard to keep everyone straight. Glad you had a caring person helping you today. That makes all the difference. Barbara _____ From: [mailto: ] On Behalf Of Dolores Sent: Tuesday, April 26, 2005 12:54 PM To: Subject: RE: Re: Dr. Sims MGH Hi Barbara, I also am sorry that I didn't pick up on the fact that you had a Gamma Knife done. I have sort of been out of the loop so to speak with my surgery and other health concerns (which are minor compared to others). I know for a fact that a Gamma Knife is no fun at all. I only thank the Good Lord that my husband was still with me as I really needed a strong hand to apply the ice packs when my eyes were swollen shut from the affects of it. I do so hope things are better for you now. I just got home from haveing a CT scan done, I hadn't been there since January 14, 2002 when my husband was there for a sonogram and coded on them. I guess my blood pressure was up pretty high when I told the nurse why I thought it was high, she said she would never forget that day so she is sure it had a tramatic effect on me. She was very kind, she even walked upstairs and waited until the Lift came to pick me up. Again I am sorry I missed the post about your Gamma Knife. Dolores Barbara Seaman wheatchild@...> wrote:Bug, thanks for the humor. I've met quite a few neurologists like that! My neuro happens to be board-certified in both psychiatry and neurology, though he only practices neurology. It's an interesting combination and gives him a very person-oriented perspective with patients. The first time I saw him it was more like talking to a psychiatrist -- I think. (I've never seen one.) He asked so many questions about my life in general and who I am. He thinks beyond the disease. Also has a great sense of humor. It's interesting that doctors seem to stereotype each other based on specialty, and I'm sure there's some truth to it. Pediatricians, they say, are most likely to go out of their way to help patients. Surgeons are most likely to be arrogant and cold. I'm also told pediatricians don't like a lot of " medicalese " even at professional gatherings and actually prefer English! Their eyes glaze over with words like " phenotype. " (A geneticist told me this.) In my experience, the physicians attached to academic institutions are more likely to have poor people skills. Many are there primarily for the research opportunities, not the interaction with patients. But there are plenty of exceptions. Take care, Barbara _____ From: [mailto: ] On Behalf Of venomvw Sent: Tuesday, April 26, 2005 7:28 AM To: Subject: Re: Dr. Sims MGH As for the doc, I had to laugh a couple of times while I was reading your post. Sounds so familiar. I work with two 1st yr med students in a program for chronically ill patients like myself and they got to hang out with me for a neurology visit one day. I think it was a real eye-opener about being on the other side, plus, one of them said " what is it about neurologists that they're all geeks ! " I cracked up. My neuromuscular doc is exactly how you described Dr. Sims. She is highly intelligent but doesn't always use the best tact when making statements and forgets that she is talking with a patient (living and breathing ), not the microscope. I think some docs have a lot of trouble separating the people part of medicine with the lab part. They're fantastic scientists and mediocre conversationalists. You seem to have the right attitude about dealing with her. Use her for knowlege and not for the " warm and fuzzies. " Best of luck and I hope you get the answers you seek from your biopsy ! Bug Quote Link to comment Share on other sites More sharing options...
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