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Howdy Shirley For 11/2 years I have had a severe tremor in my left side (leg, arm. hand), and slow to the point of loss of use. My tremor is there while resting and during action. My Neurologist kept telling me that I did "not" have PD! He ran every test known to man (bloodwork, MRI, bone scan, etc) - all came back fine. He told me he could give me medication to ease the tremor, but was unsure of the cause/reason it was there. I opted not to take the meds, but rather to get to the bottom of this. This past January I went to a Movement Disorder Clinic and saw a different Neurologist. She new right away that I had PD. Are you going to a movement disorder clinic??? Kelly in Calgary ----- Original Message ----- From: Edward Kleinmeyer <[log in to unmask]> To: <[log in to unmask]> Sent: Wednesday, March 08, 2000 3:10 PM Subject: Re: On-Off (Shirley) > Greg.Thanks for responding. When the tremors and stiffness are there then > that is an (on )? This Neuro said (you do not have PD) This was after he had > me put my thumb and finger together several times,touch my finger to his > then to my noise. Sent me for blood work of Thyroid and Enemia,both > neg.checked my reflexes with his little hammer.That was about it. When I > tried to pen him down all he said was it's inherited and gave me MYSOLINE 50 > mgs. Any thoughts?? Shirley > ----------------------------------------------------- > Click here for Free Video!! > http://www.gohip.com/freevideo/ > > ----- Original Message ----- > From: Greg Sterling <[log in to unmask]> > To: <[log in to unmask]> > Sent: Wednesday, March 08, 2000 12:07 PM > Subject: Re: On-Off (Shirley) > > > > Shirley, > > You ever throw a light switch? That's what on-off feels like. At least > for me. It is not a > > gradual thing. One minute I can be literally nimble as a gymanst. The > next slow and > > cumbersome. It's like a roller-coaster ride all day long. The worst part > is that your moods > > run the same cycle. > > > > How did your neuro decide you don't have PD? Did he come up with > something else? > > Do you respond to sinemet? > > > > > > Greg > > 47/35/35 > > > > :) > > > > > > > ** Original Subject: Re: Rating scales. Was: Long term prognosis > > > ** Original Sender: Edward Kleinmeyer <[log in to unmask]> > > > ** Original Date: Wed, 8 Mar 2000 10:30:30 -0500 > > > > > ** Original Message follows... > > > > > > > > I agree with Greg. The mood swings are so bad,but according to this > neuro I > > > have been going to I don't have PD. I don't understand his thinking. If > a > > > large amount of symptoms are there then what is going on?? Can some one > > > explain (on-off) and is there a certain amount of time or is it > different > > > for everyone? Shirley > > > ----------------------------------------------------- > > > Click here for Free Video!! > > > http://www.gohip.com/freevideo/ > > > > > > ----- Original Message -----From: Chris van der Linden > > <[log in to unmask]> > > > To: <[log in to unmask]> > > > Sent: Wednesday, March 08, 2000 6:49 AM > > > Subject: Re: Rating scales. Was: Long term prognosis > > > > > > > > > > > > > > > Dear Rita and others, > > > > > > > > As a movement disorder specialist I know the impact on daily living > for > > > > Parkinson patients very well. > > > > However, to use a scale to score this impact is not easy and therefore > > > > conventional scales are used. As a matter of fact the Hoehn and Yahr > scale > > > > and the Schwab and England scale are more than 35 years old and still > > > being > > > > used, which tells you something about the difficulty of creating a > newer > > > > scale. Scales are usually designed by the physicians for research > > > purposes > > > > and should therefore be very objective. A scale measuring the impact > on > > > > life has many subjective features and therefore not used by > clinicians. > > > As > > > > a matter of fact they may not even be interested in such a scale. It > would > > > > be wondeful, considering the extensive use of the internet, that > patients > > > > should come up with suggestions to create a scale for themselves to be > > > able > > > > to give other fellow patients an idea on their condition and to have > an > > > idea > > > > of the condition of the person they are "chatting" with. > > > > Anybody interested?? > > > > > > > > Best regards, > > > > > > > > Dr. Chris van der Linden > > > > > > > > I think it does prevent all but the "most open minded" neuro's from > > > > > comprehending the impact of the PD on daily/family living. I have > also > > > > > suggested a questionaire for the Carepartner that could be a > checklist > > > > > completed in the waiting room (most of us have plenty of time > > > > > there!)....which could be helpful in the evaluation/suggestion/ > > > > > modification/communication of treatment/medication. > > > > > > > > > > The other thing I notice is that as we "accept" the limitations of > the > > > > > progression of PD, the answers to some of the questions on the UPDRS > > > > improve. > > > > > What bothered me in the beginning, may seem insignificant now in > the > > > > realm > > > > > of everyday living and frustrations. Also my "mood" when I am asked > > > these > > > > > questions may vary.........if I am "on", I will answer one > > > way..........if > > > > I > > > > > am "off", I will usually give a more positive answer. This seems a > bit > > > > > different than one might anticipate....but when I am "off" I do not > want > > > > to > > > > > talk, elaborate, define, think.........so therefore give the answer > that > > > > will > > > > > require the least followup information from me. > > > > > > > > > > So, how do we ever get the medical community to hear our requests > for an > > > > > updated version of an old problem.........? > > > > > > > > > > Rita Weeks 55/10 > > > > > > > > > > > >** --------- End Original Message ----------- ** > > > > >