Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 hi, i am new to this group and am hoping anyone out there will give me their experience or thoughts on what my mother is going through now. after hip surgery in 1999, she began developing a multitude of symptoms (she is 74 now) she developed bradykinesia, balance problems (falls backward) small handwriting, excess salive, masked facial expression, very soft voice. these symptoms just seemed to gradually appear. about six months ago after several other regular doctors, i took her to a movement disorder specialist, he did tests and an MRI, which only showed some atrophy of the brain. he said she had Parkinsons and has her on Sinimet. She has responded a LITTLE to the medicine, her saliva is better, her facial expression is not as masked, but her balance and movement is about the same. she has no " on " or off " periods to the sinimet. she is going to another neurologist now who about a week ago said he is doubting that it is Parkinsons. we have an another appt in a few weeks and i am hoping to try and get a Pet scan for her or something to at least confirm a diagnosis. does anyone have any suggestions or experience you think may help us? thanks paula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 a, Welcome to the group, sorry you had to find us. That sounds like it is moving very fast for Parkinson's. You said there was no improvement in movement from the Sinemet - is she able to walk at all with help from a walker? Try working her arms (bending, unbending, moving around) just before she gets her Sinemet and again about 45 minutes after taking the Sinemet - do you notice any less tension after giving the Sinemet? Also is she taking the 25/100 regular Sinemet or the 50/200 CR Sinemet. I agree with Pam, this sounds as if it could be a PD+ disorder. My wife started about the same way (and had probable MSA) but it took her 5 years to get to the point it sounds as if your mother is at. Maybe the new neuro can shed more light, BUT diagnoses of any PD+ disorder is iffy at this point. They can only treat the symptoms on any of the PD+ disorders, so concentrate on treatment rather than an exact name at this point. If you have lots of money or no copay insurance, you could ask for nerve conduction tests, PET scans, genetic testing, etc. BUT remember even then you have a chance of getting a wrong diagnoses. If you treat the symptoms and get therapy, you can probably gain some years of life. Take care, Bill Werre patandpaula wrote: >hi, i am new to this group and am hoping anyone out there will give >me their experience or thoughts on what my mother is going through >now. after hip surgery in 1999, she began developing a multitude of >symptoms (she is 74 now) she developed bradykinesia, balance >problems (falls backward) small handwriting, excess salive, masked >facial expression, very soft voice. these symptoms just seemed to >gradually appear. about six months ago after several other regular >doctors, i took her to a movement disorder specialist, he did tests >and an MRI, which only showed some atrophy of the brain. he said she >had Parkinsons and has her on Sinimet. She has responded a LITTLE >to the medicine, her saliva is better, her facial expression is not >as masked, but her balance and movement is about the same. she has >no " on " or off " periods to the sinimet. she is going to another >neurologist now who about a week ago said he is doubting that it is >Parkinsons. we have an another appt in a few weeks and i am hoping >to try and get a Pet scan for her or something to at least confirm a >diagnosis. does anyone have any suggestions or experience you think >may help us? thanks paula > > >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 September 8, 2002 Report Share Posted September 8, 2002 bill, thanks for your reply. what you said about the wait and see for diagnosis is pretty much what i have been thinking. and i dont want to put her through a pet scan if its not conclusive. she is still walking and living on her own, although i am scared every time the phone rings that she has fallen. the sinimet seems to have no on or off times, it has helped a little but it doesnt seem to affect her slow movement or her balance. paula Re: my mother > a, > > Welcome to the group, sorry you had to find us. > > That sounds like it is moving very fast for Parkinson's. You said there > was no improvement in movement from the Sinemet - is she able to walk at > all with help from a walker? Try working her arms (bending, unbending, > moving around) just before she gets her Sinemet and again about 45 > minutes after taking the Sinemet - do you notice any less tension after > giving the Sinemet? Also is she taking the 25/100 regular Sinemet or > the 50/200 CR Sinemet. > > I agree with Pam, this sounds as if it could be a PD+ disorder. My wife > started about the same way (and had probable MSA) but it took her 5 > years to get to the point it sounds as if your mother is at. Maybe the > new neuro can shed more light, BUT diagnoses of any PD+ disorder is iffy > at this point. They can only treat the symptoms on any of the PD+ > disorders, so concentrate on treatment rather than an exact name at this > point. If you have lots of money or no copay insurance, you could ask > for nerve conduction tests, PET scans, genetic testing, etc. BUT > remember even then you have a chance of getting a wrong diagnoses. If > you treat the symptoms and get therapy, you can probably gain some years > of life. > > Take care, Bill Werre > > patandpaula wrote: > > >hi, i am new to this group and am hoping anyone out there will give > >me their experience or thoughts on what my mother is going through > >now. after hip surgery in 1999, she began developing a multitude of > >symptoms (she is 74 now) she developed bradykinesia, balance > >problems (falls backward) small handwriting, excess salive, masked > >facial expression, very soft voice. these symptoms just seemed to > >gradually appear. about six months ago after several other regular > >doctors, i took her to a movement disorder specialist, he did tests > >and an MRI, which only showed some atrophy of the brain. he said she > >had Parkinsons and has her on Sinimet. She has responded a LITTLE > >to the medicine, her saliva is better, her facial expression is not > >as masked, but her balance and movement is about the same. she has > >no " on " or off " periods to the sinimet. she is going to another > >neurologist now who about a week ago said he is doubting that it is > >Parkinsons. we have an another appt in a few weeks and i am hoping > >to try and get a Pet scan for her or something to at least confirm a > >diagnosis. does anyone have any suggestions or experience you think > >may help us? thanks paula > > > > > >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 September 8, 2002 Report Share Posted September 8, 2002 Dear a, I don't post on this list very often, however right now I must tell you that getting a FDG Pet scan is very ACCURATE and MUCH EASIER to have than a MRI or Ct Scan. Doctors try to do there best but even the best make mistakes like a very well know Doctor in Los Angeles: Dr Levesque who had the forethought to send my wife Deborah for this exam and come to find out, he in fact was clinically WRONG. He had reviewed her mri's, ct Scan's and written medical history for the past 3+ years and yet he was not correct with his own Dx of MSA, but being an expert in his field, he did in fact, that very same day, give her a Rx for the Pet Scans to make absolutely sure of his own professional Dx before going any further. Understand that we still do not know what is exactly wrong with Deborah, but We at least Know she does NOT have PD or MSA, These test were Conclusive... I highly suggest you ask your doctor about this for your mother, had we not found out about it, than we would have ONLY treated Deborah's symptoms as many had suggested and she surely would have died. You have to take in to account that using the wrong medications can be as dangerous as not treating the symptoms at all. I don't mean to scare you or any one else on this list, and I don't mean to stir up more controversy, but Deborah has been through HELL the last 3 years seeing the best of the best in Country and always asked for these scans and there answers were " we have the mri's " and come to find out, Almost all the PD/MSA Meds were incorrect and actually harming her.. Just for your information, on either Monday or Tuesday Deborah will be posting Clinical Documentation to back all of this up... Just know I care and don't want you or any one else to give up hope.. Or go through needless pain and/or suffering. I like Bill W., do not have PD or MSA but have and am suffering with my wife through this. God Bless, " tenacity's man " > >Reply-To: shydrager >To: shydrager > >Subject: Re: my mother >Date: Sun, 8 Sep 2002 07:30:09 -0500 > >bill, thanks for your reply. what you said about the wait and see for >diagnosis is pretty much what i have been thinking. and i dont want to put >her through a pet scan if its not conclusive. she is still walking and >living on her own, although i am scared every time the phone rings that she >has fallen. the sinimet seems to have no on or off times, it has helped a >little but it doesnt seem to affect her slow movement or her balance. >paula > Re: my mother > > > > a, > > > > Welcome to the group, sorry you had to find us. > > > > That sounds like it is moving very fast for Parkinson's. You said there > > was no improvement in movement from the Sinemet - is she able to walk at > > all with help from a walker? Try working her arms (bending, unbending, > > moving around) just before she gets her Sinemet and again about 45 > > minutes after taking the Sinemet - do you notice any less tension after > > giving the Sinemet? Also is she taking the 25/100 regular Sinemet or > > the 50/200 CR Sinemet. > > > > I agree with Pam, this sounds as if it could be a PD+ disorder. My wife > > started about the same way (and had probable MSA) but it took her 5 > > years to get to the point it sounds as if your mother is at. Maybe the > > new neuro can shed more light, BUT diagnoses of any PD+ disorder is iffy > > at this point. They can only treat the symptoms on any of the PD+ > > disorders, so concentrate on treatment rather than an exact name at this > > point. If you have lots of money or no copay insurance, you could ask > > for nerve conduction tests, PET scans, genetic testing, etc. BUT > > remember even then you have a chance of getting a wrong diagnoses. If > > you treat the symptoms and get therapy, you can probably gain some years > > of life. > > > > Take care, Bill Werre > > > > patandpaula wrote: > > > > >hi, i am new to this group and am hoping anyone out there will give > > >me their experience or thoughts on what my mother is going through > > >now. after hip surgery in 1999, she began developing a multitude of > > >symptoms (she is 74 now) she developed bradykinesia, balance > > >problems (falls backward) small handwriting, excess salive, masked > > >facial expression, very soft voice. these symptoms just seemed to > > >gradually appear. about six months ago after several other regular > > >doctors, i took her to a movement disorder specialist, he did tests > > >and an MRI, which only showed some atrophy of the brain. he said she > > >had Parkinsons and has her on Sinimet. She has responded a LITTLE > > >to the medicine, her saliva is better, her facial expression is not > > >as masked, but her balance and movement is about the same. she has > > >no " on " or off " periods to the sinimet. she is going to another > > >neurologist now who about a week ago said he is doubting that it is > > >Parkinsons. we have an another appt in a few weeks and i am hoping > > >to try and get a Pet scan for her or something to at least confirm a > > >diagnosis. does anyone have any suggestions or experience you think > > >may help us? thanks paula > > > > > > > > >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 September 8, 2002 Report Share Posted September 8, 2002 , I have read all the posts from and about Deborah on the Parkinsons website and my thoughts are with her and with you. would you mind just telling me what they do to you in a pet scan and why you think it is easier? because the MRI was very hard on my mother in her fragile condition. thank you so much paula Re: my mother > > > > > > > a, > > > > > > Welcome to the group, sorry you had to find us. > > > > > > That sounds like it is moving very fast for Parkinson's. You said there > > > was no improvement in movement from the Sinemet - is she able to walk at > > > all with help from a walker? Try working her arms (bending, unbending, > > > moving around) just before she gets her Sinemet and again about 45 > > > minutes after taking the Sinemet - do you notice any less tension after > > > giving the Sinemet? Also is she taking the 25/100 regular Sinemet or > > > the 50/200 CR Sinemet. > > > > > > I agree with Pam, this sounds as if it could be a PD+ disorder. My wife > > > started about the same way (and had probable MSA) but it took her 5 > > > years to get to the point it sounds as if your mother is at. Maybe the > > > new neuro can shed more light, BUT diagnoses of any PD+ disorder is iffy > > > at this point. They can only treat the symptoms on any of the PD+ > > > disorders, so concentrate on treatment rather than an exact name at this > > > point. If you have lots of money or no copay insurance, you could ask > > > for nerve conduction tests, PET scans, genetic testing, etc. BUT > > > remember even then you have a chance of getting a wrong diagnoses. If > > > you treat the symptoms and get therapy, you can probably gain some years > > > of life. > > > > > > Take care, Bill Werre > > > > > > patandpaula wrote: > > > > > > >hi, i am new to this group and am hoping anyone out there will give > > > >me their experience or thoughts on what my mother is going through > > > >now. after hip surgery in 1999, she began developing a multitude of > > > >symptoms (she is 74 now) she developed bradykinesia, balance > > > >problems (falls backward) small handwriting, excess salive, masked > > > >facial expression, very soft voice. these symptoms just seemed to > > > >gradually appear. about six months ago after several other regular > > > >doctors, i took her to a movement disorder specialist, he did tests > > > >and an MRI, which only showed some atrophy of the brain. he said she > > > >had Parkinsons and has her on Sinimet. She has responded a LITTLE > > > >to the medicine, her saliva is better, her facial expression is not > > > >as masked, but her balance and movement is about the same. she has > > > >no " on " or off " periods to the sinimet. she is going to another > > > >neurologist now who about a week ago said he is doubting that it is > > > >Parkinsons. we have an another appt in a few weeks and i am hoping > > > >to try and get a Pet scan for her or something to at least confirm a > > > >diagnosis. does anyone have any suggestions or experience you think > > > >may help us? thanks paula > > > > > > > > > > > >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 September 8, 2002 Report Share Posted September 8, 2002 to the group my mother also has a problem in looking down. does anyone with MSA have that problem?? thank you paula Re: my mother > > > > > > > > > > a, > > > > > > > > Welcome to the group, sorry you had to find us. > > > > > > > > That sounds like it is moving very fast for Parkinson's. You said > there > > > > was no improvement in movement from the Sinemet - is she able to walk > at > > > > all with help from a walker? Try working her arms (bending, > unbending, > > > > moving around) just before she gets her Sinemet and again about 45 > > > > minutes after taking the Sinemet - do you notice any less tension > after > > > > giving the Sinemet? Also is she taking the 25/100 regular Sinemet or > > > > the 50/200 CR Sinemet. > > > > > > > > I agree with Pam, this sounds as if it could be a PD+ disorder. My > wife > > > > started about the same way (and had probable MSA) but it took her 5 > > > > years to get to the point it sounds as if your mother is at. Maybe > the > > > > new neuro can shed more light, BUT diagnoses of any PD+ disorder is > iffy > > > > at this point. They can only treat the symptoms on any of the PD+ > > > > disorders, so concentrate on treatment rather than an exact name at > this > > > > point. If you have lots of money or no copay insurance, you could ask > > > > for nerve conduction tests, PET scans, genetic testing, etc. BUT > > > > remember even then you have a chance of getting a wrong diagnoses. If > > > > you treat the symptoms and get therapy, you can probably gain some > years > > > > of life. > > > > > > > > Take care, Bill Werre > > > > > > > > patandpaula wrote: > > > > > > > > >hi, i am new to this group and am hoping anyone out there will give > > > > >me their experience or thoughts on what my mother is going through > > > > >now. after hip surgery in 1999, she began developing a multitude of > > > > >symptoms (she is 74 now) she developed bradykinesia, balance > > > > >problems (falls backward) small handwriting, excess salive, masked > > > > >facial expression, very soft voice. these symptoms just seemed to > > > > >gradually appear. about six months ago after several other regular > > > > >doctors, i took her to a movement disorder specialist, he did tests > > > > >and an MRI, which only showed some atrophy of the brain. he said she > > > > >had Parkinsons and has her on Sinimet. She has responded a LITTLE > > > > >to the medicine, her saliva is better, her facial expression is not > > > > >as masked, but her balance and movement is about the same. she has > > > > >no " on " or off " periods to the sinimet. she is going to another > > > > >neurologist now who about a week ago said he is doubting that it is > > > > >Parkinsons. we have an another appt in a few weeks and i am hoping > > > > >to try and get a Pet scan for her or something to at least confirm a > > > > >diagnosis. does anyone have any suggestions or experience you think > > > > >may help us? thanks paula > > > > > > > > > > > > > > >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 September 8, 2002 Report Share Posted September 8, 2002 a, I believe that symptom is often seen in PSP (progressive supranuclear palsy). Has she been evaluated for that? It is also a " Parkinson's plus " disorder. Carol & Rob Lexington, MA Re: my mother > > > > > > > > > > > > > a, > > > > > > > > > > Welcome to the group, sorry you had to find us. > > > > > > > > > > That sounds like it is moving very fast for Parkinson's. You said > > there > > > > > was no improvement in movement from the Sinemet - is she able to > walk > > at > > > > > all with help from a walker? Try working her arms (bending, > > unbending, > > > > > moving around) just before she gets her Sinemet and again about 45 > > > > > minutes after taking the Sinemet - do you notice any less tension > > after > > > > > giving the Sinemet? Also is she taking the 25/100 regular Sinemet > or > > > > > the 50/200 CR Sinemet. > > > > > > > > > > I agree with Pam, this sounds as if it could be a PD+ disorder. My > > wife > > > > > started about the same way (and had probable MSA) but it took her 5 > > > > > years to get to the point it sounds as if your mother is at. Maybe > > the > > > > > new neuro can shed more light, BUT diagnoses of any PD+ disorder is > > iffy > > > > > at this point. They can only treat the symptoms on any of the PD+ > > > > > disorders, so concentrate on treatment rather than an exact name at > > this > > > > > point. If you have lots of money or no copay insurance, you could > ask > > > > > for nerve conduction tests, PET scans, genetic testing, etc. BUT > > > > > remember even then you have a chance of getting a wrong diagnoses. > If > > > > > you treat the symptoms and get therapy, you can probably gain some > > years > > > > > of life. > > > > > > > > > > Take care, Bill Werre > > > > > > > > > > patandpaula wrote: > > > > > > > > > > >hi, i am new to this group and am hoping anyone out there will give > > > > > >me their experience or thoughts on what my mother is going through > > > > > >now. after hip surgery in 1999, she began developing a multitude > of > > > > > >symptoms (she is 74 now) she developed bradykinesia, balance > > > > > >problems (falls backward) small handwriting, excess salive, masked > > > > > >facial expression, very soft voice. these symptoms just seemed to > > > > > >gradually appear. about six months ago after several other regular > > > > > >doctors, i took her to a movement disorder specialist, he did tests > > > > > >and an MRI, which only showed some atrophy of the brain. he said > she > > > > > >had Parkinsons and has her on Sinimet. She has responded a LITTLE > > > > > >to the medicine, her saliva is better, her facial expression is not > > > > > >as masked, but her balance and movement is about the same. she has > > > > > >no " on " or off " periods to the sinimet. she is going to another > > > > > >neurologist now who about a week ago said he is doubting that it is > > > > > >Parkinsons. we have an another appt in a few weeks and i am hoping > > > > > >to try and get a Pet scan for her or something to at least confirm > a > > > > > >diagnosis. does anyone have any suggestions or experience you > think > > > > > >may help us? thanks paula > > > > > > > > > > > > > > > > > >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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