Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 : Don't you just hate it when a doctor tell's you it's all in your head. I'm sure that you know how you feel. My friends mother was laid to rest yesterday and the doctors told her for 6 months that it was all in her head. Only it turned out to be Esophageal cancer.She underwent radical surgery, chemotherapy,radiation, throat stretching and etc. They were wrong, doctors do make mistakes.Maybe something could of been done for her if the doctor would of found it sooner, I don't know, but I do know that most of the time we know what is right and what feels wrong with our body's. It's a shame that she had to suffer for 14 months. Just because you look fine doesn't mean that the MSA isn't there. That seem to be what everyone tell's Fred, gee you look good, but his not okay, and they don't see that part. It took us over a year before a doctor came up with a DX , Many doctors said that there was nothing wrong, but there was. I'm just glad that our MD was wise enough to send Fred to doctor that knew it was more then " just in his head " . It has to do with other parts also. I hope you fine a doctor who will understand how you are feeling. {{hugs}} Vera Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 , Who reffered you to s Hopkins? They should get a report which should explain why the neuro thought what she did. Maybe you are not showing the neurological signs, like cogwheeling and reflex problems associated with MSA. I would certainly keep asking the referring doctor for an explanation. We know that younger people do get MSA although it is not a huge number. One of the studies said something like 32 was the youngest in the study. Anne was only about 40 when she was diagnosed as SDS. Hang in there and keep bugging them for answers. Take care, Bill and Charlotte --------------------------------------------------------------------------------\ --------- Txbriteyes@... wrote: > Hi Everyone > > I had an appt. At s Hopkins yesterday. I saw a neuro in the > movement clinic. As soon as she wheeled me back to her office she instantly > said i did not have shy-drager syndrome. she had taken only 2 blood > pressures sitting and lying down. she only took the pressure standing when i > insisted, then she saw the blood pressure drop. She feels i do have the > autonomic problem but she said there is not a doctor at johns hopkins that > can deal with that .. she said i needed to go to the mayo clinic. This > doctors says that shy-drager is not that rare but i donot fit the age > bracket.. She also said my gait balance tremors were basically in my head.. > Jeez... She said she could nto address the loss of fluid or my fast heart > rate becuase she is a neurologist. Well,, I have decided to go back to my > cardiologist here and see if she can get my fluids to stay,, and try to get > that heart rate down while standing... I guess I could get some more therapyu > on the neck and shoulders.. And as far as my walking and balance.tremors and > rigity.. I sure hope it gets better, I have fallen 2 times today. Jeez.. > This doctor seemed very put out that she had to spend 2 hours with me.. What > is so upseting about this is she did not even have any of my medical > records.,,, they had sent them to the wrong office.. But when i told her my > test results .. on my tilt table, hemodynamic studies... she said they were > wrong. She said she could only dx with what she could see and since my blood > pressure was up sitting and lying down then she questioned an autonomic > problem.. Like I said earlier,,, if was with me insisting that she take the > pressure stand theat she finally believed me.. I think she based her fiinding > on that I dont look sick.. I guess if i had showen up with my makeup off and > my hair untouched she might have taken me seriously.. She even discredited > the doctors findings in fairfax.. when I told her what they had said.. > > Well.. it sure was an interesting visit..... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 , Who reffered you to s Hopkins? They should get a report which should explain why the neuro thought what she did. Maybe you are not showing the neurological signs, like cogwheeling and reflex problems associated with MSA. I would certainly keep asking the referring doctor for an explanation. We know that younger people do get MSA although it is not a huge number. One of the studies said something like 32 was the youngest in the study. Anne was only about 40 when she was diagnosed as SDS. Hang in there and keep bugging them for answers. Take care, Bill and Charlotte --------------------------------------------------------------------------------\ --------- Txbriteyes@... wrote: > Hi Everyone > > I had an appt. At s Hopkins yesterday. I saw a neuro in the > movement clinic. As soon as she wheeled me back to her office she instantly > said i did not have shy-drager syndrome. she had taken only 2 blood > pressures sitting and lying down. she only took the pressure standing when i > insisted, then she saw the blood pressure drop. She feels i do have the > autonomic problem but she said there is not a doctor at johns hopkins that > can deal with that .. she said i needed to go to the mayo clinic. This > doctors says that shy-drager is not that rare but i donot fit the age > bracket.. She also said my gait balance tremors were basically in my head.. > Jeez... She said she could nto address the loss of fluid or my fast heart > rate becuase she is a neurologist. Well,, I have decided to go back to my > cardiologist here and see if she can get my fluids to stay,, and try to get > that heart rate down while standing... I guess I could get some more therapyu > on the neck and shoulders.. And as far as my walking and balance.tremors and > rigity.. I sure hope it gets better, I have fallen 2 times today. Jeez.. > This doctor seemed very put out that she had to spend 2 hours with me.. What > is so upseting about this is she did not even have any of my medical > records.,,, they had sent them to the wrong office.. But when i told her my > test results .. on my tilt table, hemodynamic studies... she said they were > wrong. She said she could only dx with what she could see and since my blood > pressure was up sitting and lying down then she questioned an autonomic > problem.. Like I said earlier,,, if was with me insisting that she take the > pressure stand theat she finally believed me.. I think she based her fiinding > on that I dont look sick.. I guess if i had showen up with my makeup off and > my hair untouched she might have taken me seriously.. She even discredited > the doctors findings in fairfax.. when I told her what they had said.. > > Well.. it sure was an interesting visit..... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Bill, I have lots of ridgity.. I can barely hold my head up from the pain in my shoulders and neck.. This doctor .. Liz O'hern, did not seem to be interested in anything I had to say. What I think happened it as we were going into her office another doctor wanted to speak to her.. she was not happy about something.. But my doctor asked her if it could wait and she said yes.. It is very interesting that she did not even take the time to call upstairs to another neuro's office to get my records,,, they were sent to him first but felt the movement clinic was where i needed to be seen. I have a gait problem and tremors which she said is a conversion disorder.. My walking problem started in the early fall of last year and my tremors about late fall. How could she tell that without my records.. She disputed everything i said about why the doctors wanted me seen up there... I was refered to jh by 3 doctors...my endo, my cardio and my internist... It is going to be interesting what they have to say about her dx. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Hello, I know doctors are not god, but this doctor could have listened to me more, and looked at my medical records before she discredited everything i said.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Bill, I have tried baclofen, it dropped my blood pressure. This doctor wants me to see a doctor a mayo clinic to have autonomic studies.. I told her that i have had those at the cleveland clinic and richmond.. The doctors sent me there,,, not my choice.. I have had several doctors tell me I have shy-drager, dyautonomia and pure autonomic failure but never have i had a doctor tell me i wasn't telling the truth. Like I said before the walking , tremors and ridigity started last year... I canot believe this doctor would think i would want a dx of a terminal illness. Jeez.. or would I choose to make my symptoms up.. I am the one that had not been able to care for my children and so my mother both shares responsibilites... It is amazing how one can prejudge some even before they examined them.. I even let this doctor video tape me, she was asking me to repeat things back and to do hand and leg movements.. They are very slow.. but it depends on my activites some days are better thatn other with the movement.. I am a very out going person,.,, and I was very successful in my business and a wonderful mother.. I cannot believe she thinks i would pretend.. How can one pretend to be dehydrated, blood pressure very low.. and their heart rate very high.. and lose the control of the bladder. JEEZ...I can't wait until she gets sent a copy of my medical records.. If she choses to read them.. I also told her that there were a few people in the shy-drager forum that has about the same symptoms as i do.,that are about my age.. she said people should not read things online about medical conditions, it makes things worse... I disagree.. i had these symptoms way before i signed on to the forum,, and it has helped me alot with the feedback. Well i am going to talk to my cardiologist on Monday.. he is going to be shocked about this.. He said he had never seen a person with a autonomic problem as worse as mine.. and this doctor after taking 2 bp readings sitting and lyiong down said i did not have one.. LIke I said before it was only until i insisted she have me stand that she knew there was a problem with the autonomic system,, and then she back stepped and said i could have dyautnomia..Jeez..... I tell you.. like i dont have better things to do with my life then to pretend to be sick and run to the doctor.. Thanks everyone for letting me vent.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 PAT HI. GOD DOESN'T WORK AT JOHN HOPKINS:) THERE WERE TIMES I WOULD GET REFERRED TO ANOTHER SPECIALIST AND THE REPORT THAT THE SPECIALIST WAS TO GET WAS WITH MY FILE. SOMETIMES MAIN FILES ARE KEPT AND MAYBE SHE DIDN'T HAVE THE MAIN FILE INFORMATION. WITH MSA SOMETIMES AS WITH OTHER RARE AND LONG TERM ILLNESSES SYMPTOMS TAKE A WHILE TO PROGRESS TO THE POINT THAT A FINAL DIAGNOSIS CAN BE MADE. DIAGNOSES CHANGE. Werre wrote: > > , > > Who reffered you to s Hopkins? They should get a report which should explain > why the neuro thought what she did. Maybe you are not showing the neurological > signs, like cogwheeling and reflex problems associated with MSA. I would > certainly keep asking the referring doctor for an explanation. > > We know that younger people do get MSA although it is not a huge number. One of > the studies said something like 32 was the youngest in the study. Anne was only > about 40 when she was diagnosed as SDS. > > Hang in there and keep bugging them for answers. > > Take care, Bill and Charlotte > --------------------------------------------------------------------------------\ --------- > > Txbriteyes@... wrote: > > > Hi Everyone > > > > I had an appt. At s Hopkins yesterday. I saw a neuro in the > > movement clinic. As soon as she wheeled me back to her office she instantly > > said i did not have shy-drager syndrome. she had taken only 2 blood > > pressures sitting and lying down. she only took the pressure standing when i > > insisted, then she saw the blood pressure drop. She feels i do have the > > autonomic problem but she said there is not a doctor at johns hopkins that > > can deal with that .. she said i needed to go to the mayo clinic. This > > doctors says that shy-drager is not that rare but i donot fit the age > > bracket.. B.S. TIRED OF THE AGE BRACKETS. SHE ISN'T GOD. JOHN HOPKINS IS GREAT RESEARCH FACILITY THOUGH. NOT THAT MY OPINION MATTERS:) She also said my gait balance tremors were basically in my head.. WELL ALL NEURO DISEASE ARE IN UR HEAD:) OLD JOKE HERE. SERIOUSLY DID SHE SAY THAT STRESS AMPLIFIES TREMORS? > > Jeez... She said she could nto address the loss of fluid or my fast heart > > rate becuase she is a neurologist. YES . INTERNISTS/GP ADDRESS IT WITH CARDIAC CONSULT TO RULE OUT POSSIBLE CARDIAC PROBLEMS. U EVER LOOK INTO P.O.T.S.?? JUST BECAUSE SOMEONE HAS ORTHOSTATIC HYPOTENSION AND P.D. SIGNS DOESN'T MEAN THEY HAVE SDS. Well,, I have decided to go back to my > > cardiologist here and see if she can get my fluids to stay, MEASURE UR INTAKE AND OUTPUT OF URINE. TAKE THIS WITH TO THE DOCS. THE DRUG STORES HAVE 'HATS' THAT U CAN MEASURE UR OUTPUT. , and try to get > > that heart rate down while standing... DO U DO SOME FORM OF SUPERVISED EXERCISE? CHOLESTEROL PROFILE??NOT JUST CHOLESTEROL BLOOD TEST. I guess I could get some more therapy > > on the neck and shoulders.. PHYSICAL THERAPY?? And as far as my walking and balance.tremors and > > rigity.. WHAT MEDS ARE U ON AGAIN?? I sure hope it gets better, I have fallen 2 times today. Jeez.. > > This doctor seemed very put out that she had to spend 2 hours with me.. What > > is so upseting about this is she did not even have any of my medical > > records.,,, they had sent them to the wrong office.. But when i told her my > > test results .. on my tilt table, hemodynamic studies... she said they were > > wrong. She said she could only dx with what she could see and since my blood > > pressure was up sitting and lying down then she questioned an autonomic > > problem.. Like I said earlier,,, if was with me insisting that she take the > > pressure stand theat she finally believed me.. I think she based her fiinding > > on that I dont look sick.. I guess if i had showen up with my makeup off and > > my hair untouched she might have taken me seriously.. She even discredited > > the doctors findings in fairfax.. when I told her what they had said.. > > > > Well.. it sure was an interesting visit..... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 PAT HI. GOD DOESN'T WORK AT JOHN HOPKINS:) THERE WERE TIMES I WOULD GET REFERRED TO ANOTHER SPECIALIST AND THE REPORT THAT THE SPECIALIST WAS TO GET WAS WITH MY FILE. SOMETIMES MAIN FILES ARE KEPT AND MAYBE SHE DIDN'T HAVE THE MAIN FILE INFORMATION. WITH MSA SOMETIMES AS WITH OTHER RARE AND LONG TERM ILLNESSES SYMPTOMS TAKE A WHILE TO PROGRESS TO THE POINT THAT A FINAL DIAGNOSIS CAN BE MADE. DIAGNOSES CHANGE. Werre wrote: > > , > > Who reffered you to s Hopkins? They should get a report which should explain > why the neuro thought what she did. Maybe you are not showing the neurological > signs, like cogwheeling and reflex problems associated with MSA. I would > certainly keep asking the referring doctor for an explanation. > > We know that younger people do get MSA although it is not a huge number. One of > the studies said something like 32 was the youngest in the study. Anne was only > about 40 when she was diagnosed as SDS. > > Hang in there and keep bugging them for answers. > > Take care, Bill and Charlotte > --------------------------------------------------------------------------------\ --------- > > Txbriteyes@... wrote: > > > Hi Everyone > > > > I had an appt. At s Hopkins yesterday. I saw a neuro in the > > movement clinic. As soon as she wheeled me back to her office she instantly > > said i did not have shy-drager syndrome. she had taken only 2 blood > > pressures sitting and lying down. she only took the pressure standing when i > > insisted, then she saw the blood pressure drop. She feels i do have the > > autonomic problem but she said there is not a doctor at johns hopkins that > > can deal with that .. she said i needed to go to the mayo clinic. This > > doctors says that shy-drager is not that rare but i donot fit the age > > bracket.. B.S. TIRED OF THE AGE BRACKETS. SHE ISN'T GOD. JOHN HOPKINS IS GREAT RESEARCH FACILITY THOUGH. NOT THAT MY OPINION MATTERS:) She also said my gait balance tremors were basically in my head.. WELL ALL NEURO DISEASE ARE IN UR HEAD:) OLD JOKE HERE. SERIOUSLY DID SHE SAY THAT STRESS AMPLIFIES TREMORS? > > Jeez... She said she could nto address the loss of fluid or my fast heart > > rate becuase she is a neurologist. YES . INTERNISTS/GP ADDRESS IT WITH CARDIAC CONSULT TO RULE OUT POSSIBLE CARDIAC PROBLEMS. U EVER LOOK INTO P.O.T.S.?? JUST BECAUSE SOMEONE HAS ORTHOSTATIC HYPOTENSION AND P.D. SIGNS DOESN'T MEAN THEY HAVE SDS. Well,, I have decided to go back to my > > cardiologist here and see if she can get my fluids to stay, MEASURE UR INTAKE AND OUTPUT OF URINE. TAKE THIS WITH TO THE DOCS. THE DRUG STORES HAVE 'HATS' THAT U CAN MEASURE UR OUTPUT. , and try to get > > that heart rate down while standing... DO U DO SOME FORM OF SUPERVISED EXERCISE? CHOLESTEROL PROFILE??NOT JUST CHOLESTEROL BLOOD TEST. I guess I could get some more therapy > > on the neck and shoulders.. PHYSICAL THERAPY?? And as far as my walking and balance.tremors and > > rigity.. WHAT MEDS ARE U ON AGAIN?? I sure hope it gets better, I have fallen 2 times today. Jeez.. > > This doctor seemed very put out that she had to spend 2 hours with me.. What > > is so upseting about this is she did not even have any of my medical > > records.,,, they had sent them to the wrong office.. But when i told her my > > test results .. on my tilt table, hemodynamic studies... she said they were > > wrong. She said she could only dx with what she could see and since my blood > > pressure was up sitting and lying down then she questioned an autonomic > > problem.. Like I said earlier,,, if was with me insisting that she take the > > pressure stand theat she finally believed me.. I think she based her fiinding > > on that I dont look sick.. I guess if i had showen up with my makeup off and > > my hair untouched she might have taken me seriously.. She even discredited > > the doctors findings in fairfax.. when I told her what they had said.. > > > > Well.. it sure was an interesting visit..... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 CONVERSION DISORDER! JEEZE OK NOW THE PSYCH VISIT CONSULT IS COMING. BE PREPARED:) Txbriteyes@... wrote: > > Bill, > > I have lots of ridgity.. I can barely hold my head up from the pain in > my shoulders and neck.. This doctor .. Liz O'hern, did not seem to be > interested in anything I had to say. What I think happened it as we were > going into her office another doctor wanted to speak to her.. she was not > happy about something.. But my doctor asked her if it could wait and she said > yes.. It is very interesting that she did not even take the time to call > upstairs to another neuro's office to get my records,,, they were sent to him > first but felt the movement clinic was where i needed to be seen. I have a > gait problem and tremors which she said is a conversion disorder.. My > walking problem started in the early fall of last year and my tremors about > late fall. How could she tell that without my records.. She disputed > everything i said about why the doctors wanted me seen up there... I was > refered to jh by 3 doctors...my endo, my cardio and my internist... It is > going to be interesting what they have to say about her dx. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 CONVERSION DISORDER! JEEZE OK NOW THE PSYCH VISIT CONSULT IS COMING. BE PREPARED:) Txbriteyes@... wrote: > > Bill, > > I have lots of ridgity.. I can barely hold my head up from the pain in > my shoulders and neck.. This doctor .. Liz O'hern, did not seem to be > interested in anything I had to say. What I think happened it as we were > going into her office another doctor wanted to speak to her.. she was not > happy about something.. But my doctor asked her if it could wait and she said > yes.. It is very interesting that she did not even take the time to call > upstairs to another neuro's office to get my records,,, they were sent to him > first but felt the movement clinic was where i needed to be seen. I have a > gait problem and tremors which she said is a conversion disorder.. My > walking problem started in the early fall of last year and my tremors about > late fall. How could she tell that without my records.. She disputed > everything i said about why the doctors wanted me seen up there... I was > refered to jh by 3 doctors...my endo, my cardio and my internist... It is > going to be interesting what they have to say about her dx. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 , You said " she was not happy about something. " We do not have that problem anymore, but once upon a time ) Charlotte had a problem like that monthly ) Maybe that is an advantage to a male doctor ) They are more inclined to be happy or grumpy all the time ) My family doctor does get unhappy when he gets a big repair bill on his airplane or Mercedes. I just ask him if his rates are going up again ) Now Charmayne, Anne, and all others that pick on us males can let fly again ) Seriously, the pain in your neck and shoulder's could come from muscle spasm. You could mention to one of your doctor's that Baclofen has helped many MSA patients with that problem. I do not know if Baclofen would be bad for your heart problems as not that many people with MSA have the heart problems you have been having. If they do not think it would make the heart problems worse, it might help the tight muscles. There are other medicines they could try for muscle spasm also. Take care, Bill and Charlotte ======================================================== Txbriteyes@... wrote: > Bill, > > I have lots of ridgity.. I can barely hold my head up from the pain in > my shoulders and neck.. This doctor .. Liz O'hern, did not seem to be > interested in anything I had to say. What I think happened it as we were > going into her office another doctor wanted to speak to her.. she was not > happy about something.. But my doctor asked her if it could wait and she said > yes.. It is very interesting that she did not even take the time to call > upstairs to another neuro's office to get my records,,, they were sent to him > first but felt the movement clinic was where i needed to be seen. I have a > gait problem and tremors which she said is a conversion disorder.. My > walking problem started in the early fall of last year and my tremors about > late fall. How could she tell that without my records.. She disputed > everything i said about why the doctors wanted me seen up there... I was > refered to jh by 3 doctors...my endo, my cardio and my internist... It is > going to be interesting what they have to say about her dx. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 , You said " she was not happy about something. " We do not have that problem anymore, but once upon a time ) Charlotte had a problem like that monthly ) Maybe that is an advantage to a male doctor ) They are more inclined to be happy or grumpy all the time ) My family doctor does get unhappy when he gets a big repair bill on his airplane or Mercedes. I just ask him if his rates are going up again ) Now Charmayne, Anne, and all others that pick on us males can let fly again ) Seriously, the pain in your neck and shoulder's could come from muscle spasm. You could mention to one of your doctor's that Baclofen has helped many MSA patients with that problem. I do not know if Baclofen would be bad for your heart problems as not that many people with MSA have the heart problems you have been having. If they do not think it would make the heart problems worse, it might help the tight muscles. There are other medicines they could try for muscle spasm also. Take care, Bill and Charlotte ======================================================== Txbriteyes@... wrote: > Bill, > > I have lots of ridgity.. I can barely hold my head up from the pain in > my shoulders and neck.. This doctor .. Liz O'hern, did not seem to be > interested in anything I had to say. What I think happened it as we were > going into her office another doctor wanted to speak to her.. she was not > happy about something.. But my doctor asked her if it could wait and she said > yes.. It is very interesting that she did not even take the time to call > upstairs to another neuro's office to get my records,,, they were sent to him > first but felt the movement clinic was where i needed to be seen. I have a > gait problem and tremors which she said is a conversion disorder.. My > walking problem started in the early fall of last year and my tremors about > late fall. How could she tell that without my records.. She disputed > everything i said about why the doctors wanted me seen up there... I was > refered to jh by 3 doctors...my endo, my cardio and my internist... It is > going to be interesting what they have to say about her dx. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 , Thank you so much for writing.. What this doctor judged me on was my age.. She said that I was to young to have Shy-Drager.. If she would have taken the time to call upstairs to get my test results from a neuro we sent them to before they had asked us to go to this doctor she would had more to go on.. She could go on my tilt tests which i failed, my incontince, contipation, not able to sweat, etc. I am sure my cardiologist will be giveing her a call. I thought one thing the doctor said was very interesting... she kept telling me if i would fall she would get fired..she said that when she was asking me to walk a staight line,, which i couldn;t stand on one foot which i couldn't. But i did give it a good try. After I started limping with my right leg last year then the muscles got so ridgid I had therrapy.. then my orthopedic doctor noticed that my right leg was 1 1/2 shorter.. she had a lift made for the shoe.. I now wear it daily. At first it hurt my hips until I got use to it..The after 6 months it sarted in the left leg and then the tremors started.. I dont think i was under much stress. not anymore that the normal.. I know I have an autonomic problem my hemodyanamic studies showed that.. So that is why i will not take this dcotrs advice and go to the mayo clinic, i am not having tests that i have had 2 times repeated... If she would have had my records she would have known this.. She said she could only dx what she sees.. I find that very odd. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 , Thank you so much for writing.. What this doctor judged me on was my age.. She said that I was to young to have Shy-Drager.. If she would have taken the time to call upstairs to get my test results from a neuro we sent them to before they had asked us to go to this doctor she would had more to go on.. She could go on my tilt tests which i failed, my incontince, contipation, not able to sweat, etc. I am sure my cardiologist will be giveing her a call. I thought one thing the doctor said was very interesting... she kept telling me if i would fall she would get fired..she said that when she was asking me to walk a staight line,, which i couldn;t stand on one foot which i couldn't. But i did give it a good try. After I started limping with my right leg last year then the muscles got so ridgid I had therrapy.. then my orthopedic doctor noticed that my right leg was 1 1/2 shorter.. she had a lift made for the shoe.. I now wear it daily. At first it hurt my hips until I got use to it..The after 6 months it sarted in the left leg and then the tremors started.. I dont think i was under much stress. not anymore that the normal.. I know I have an autonomic problem my hemodyanamic studies showed that.. So that is why i will not take this dcotrs advice and go to the mayo clinic, i am not having tests that i have had 2 times repeated... If she would have had my records she would have known this.. She said she could only dx what she sees.. I find that very odd. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 , Please understand this is not a letter that argues with you. However, I want to help you see what your doctor was saying. And why your new doctor can and should not attempt such a diagnosis. A conversion disorder is not a conscious effort to gain attention. Instead it is the unconscious conversion of psychological stress into phsycial symptoms. Here is a short description of diagnositic criteria: http://www.whfreeman.com/abnormalpsychology/DSM17.htm A longer description: http://www.intelihealth.com/IH/ihtIH/WSIHW000/8271/8860.html And finally from THE Merk manual: http://www.merck.com/pubs/mmanual/section15/chapter186/186c.htm You will want to read and use it. For example: Did you have any psychological stresses prior to the onset of the symptoms? (Loss of a parent, tragic event in your life, robbery or other event that left you feeling powerless, etc...) Do the symptoms tend to involve voluntary control or involuntary control? Do the symptoms reoccur? Or have the symptoms been constant? To quote from the Merck Manual: Generally, onset of symptoms is linked to a socially or psychologically stressful event. The symptom must be clinically significant; ie, it must be distressing enough to disrupt the patient's social, occupational, or other important area of functioning. A patient may have a single episode or sporadic ones; usually, episodes are brief. When hospitalized, patients with conversion symptoms generally improve within 2 wk; however, 20 to 25% have recurrences within a year, and in some, symptoms become chronic. Since you indicate that your symptoms have been constant, it is quite likely that Somatization Disorder would be a better 'diagnosis': http://www.merck.com/pubs/mmanual/section15/chapter186/186b.htm Please understand, I am not saying this is the case for you. In fact, I would neatly fit into that diagnosis. So would most patients on this email list. So would most people with MS. Or Post Polio Syndrome. Or Parkinsons Disease (where one source stated " Tests are not usually specific for Parkinson's, but they may be required to rule out other disorders that cause similar symptoms. " ) Or... Well, you get the idea. Many neurological symptoms do not clearly reveal themselves through diagnostic techniques. As my neurologist (and others here in this group indicated) during the early stages MSA (and other disorders) do not show clearly on MRIs. No matter how much your symptoms appear to be due to a conversion or a somatization disorder, a neurologist can and should NOT make that diagnosis. It would be rather like your dentist telling you that you had an inoperable tumor. He might discover the tumor, but your dentist should refer you to a physician that can more accurately diagnose the problem. That was, after all, why your cardiologist sent you to a specialist. However, having said all that, let me point out that you are definitely in the realm where there is little doctors can do for you. Let me explain. Even if your doctor can provide an accurate diagnosis, there is nothing they can do about the primary cause of your problem. How do I know this? Well outside of having very similar problems, it's clear the diagnostic tests have not yet uncovered a specific problem. So, what can and should your doctors do? And what should you do? First, you need to recognize that all your doctors can do is to help you manage the symptoms. That is the best approach you can take. It is not an easy course of action to take. Believe me, I *know*! Chronic illness takes a tremendous toll. It is very difficult to adjust to the fact that you will never feel better. In fact, one of the hardest things we can do is to face our own mortallity day after day after day ... We normally like to think we have everything under control. In fact we don't. Might I suggest a book that might help ... A Delicate Balance: Living Successfully with Chronic Illness -- Milstrey Wells. Anyway, please know that I do understand your situation. And I certainly wish you will as you proceed with your Journey. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 , Because the only way of diagnosing MSA for sure is through an autopsy, all the doctors have to go on is a particular symptom set. I would think any doctor would be interested in obtaining the biggest picture of you (not only what he or she sees during a particular visit) when trying to make a diagnosis. It's a best guess -- and it sounds as though your doctor didn't have enough info to make that. Debbie Debbie White dwhite@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 , Because the only way of diagnosing MSA for sure is through an autopsy, all the doctors have to go on is a particular symptom set. I would think any doctor would be interested in obtaining the biggest picture of you (not only what he or she sees during a particular visit) when trying to make a diagnosis. It's a best guess -- and it sounds as though your doctor didn't have enough info to make that. Debbie Debbie White dwhite@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 I got back this morning from the chili cookoff. I came in 9th out of 102 cooks so I am happy. The weather on Friday night was horrible. I was back at the motel and the thunder was really bad and it really rained. Saturday was fine thank goodness or I would not have been able to cook. The pain was fine until a friend of mine has a nice dog but she was not paying a lot of attention to and he wanted to take off and he knocked her beer over, her cigarettes off her chair and hit me in the stomach. My chair started over but Duff caught it but the pain was intolerable. She was more concerned about beer and cigs instead o me and I had to take a pain pill and the pain has been horrific since. Take care, Irene CO-moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 Irene, Congrats on the 9th place, and I'm terribly sorry about the additional pain incurred...*ouch* ...*HUG*...and worse, that a friend was involved and so self-involved missed your pain. *praying you feel better soon* >From: patidu@... >Reply-To: >To: >Subject: Re: I am Back >Date: Sun, 6 May 2001 15:33:25 EDT > >I got back this morning from the chili cookoff. I came in 9th out of 102 >cooks so I am happy. The weather on Friday night was horrible. I was back >at the motel and the thunder was really bad and it really rained. Saturday >was fine thank goodness or I would not have been able to cook. > >The pain was fine until a friend of mine has a nice dog but she was not >paying a lot of attention to and he wanted to take off and he knocked her >beer over, her cigarettes off her chair and hit me in the stomach. My >chair >started over but Duff caught it but the pain was intolerable. She was more >concerned about beer and cigs instead o me and I had to take a pain pill >and >the pain has been horrific since. > >Take care, >Irene >CO-moderator > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Irene: I'm happy AND sad for you all at the same time. Are you feeling better? GENTLE hug, Jazzy Co-Moderator Re: I am Back >Date: Sun, 6 May 2001 15:33:25 EDT > >I got back this morning from the chili cookoff. I came in 9th out of 102 >cooks so I am happy. The weather on Friday night was horrible. I was back >at the motel and the thunder was really bad and it really rained. Saturday >was fine thank goodness or I would not have been able to cook. > >The pain was fine until a friend of mine has a nice dog but she was not >paying a lot of attention to and he wanted to take off and he knocked her >beer over, her cigarettes off her chair and hit me in the stomach. My >chair >started over but Duff caught it but the pain was intolerable. She was more >concerned about beer and cigs instead o me and I had to take a pain pill >and >the pain has been horrific since. > >Take care, >Irene >CO-moderator > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Congratulations on doing so well, especially since you were feeling so bad last week. I'm sorry to hear of your dog encounter. Darcy Quote Link to comment Share on other sites More sharing options...
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