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Shirley............... before I was diagnosed I had gone to my MD many, many times..once or twice a month for a year with various complaints including at the last month a chart that I made up of my symptoms and the names of various diseases that matched the symptoms and the MD never knew what was wrong with me..........when I showed up one day in tears asking "what's wrong with me???" and "that I couldnd't go on like this", he finally referred me to a neurologist (widely known and respected in my area) who did say he thought I MIGHT have PD....he put me on sinemet 3 times/day (strong dose) and I immediately had a lot of tremors all over my body every 10 to 15 minutes. Three days later I stopped the medicine on my own and went back to my MD and got another referral to a other neurologist who wasn't too knowledgeable and then a third neurologist......she gave me no medication until she did a 6 month observation ....then mirapex and now sinemet (very low dose) has been added. I guess what I'm saying is keep going til you find a doctor that will help you and not just guess each time. The great people on PIEN helped me see that.........it takes hard work, perserverance, persistance along with good medical support....we really can do and be better off than we are...just don't give up . ...Joan Hartman ----- Original Message ----- From: Edward Kleinmeyer <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, January 07, 2000 11:55 AM Subject: Re: symptoms of PD/Looong Reply > Thanks Barb, I seen the neuroligist this A.M. and he said ( I don't think > tou have PD). But he could not give me any answers to questions like, why I > get chocked,why I shake,why I can't write anymore, why my chin trimbles,why > my legs and feet swell and ache,why my teeth don't fit even after I have had > them relined 6 months or so ago,why my vision has changed even after I had > them checked 1 yr. ago,why I have ringging in my ears. All he done was a > visual check, and sent me for 2 blood tests. 1 for thyroid 1 for enemea. > Your experienced with this, Please tell me if I am off base to feel less > than satisfied with this evaluation? Be honest,I'm a big girl. Thanks > Shirley > -----Original Message----- > From: Barb_MSN <[log in to unmask]> > To: [log in to unmask] <[log in to unmask]> > Date: Friday, January 07, 2000 11:49 AM > Subject: Re: symptoms of PD/Looong Reply > > > >Shirley.... > > > >I've had problems swallowing and don't have > >dentures (lotsa root canals tho) > ><UGH!> > > > >In my research, I've come to the conclusion that the dental > >and throat aspects of PD are either sadly overlooked by > >the respective medical professionals who should be up > >on these type problems or they just don't know all that much > >about what's going on with the average PD patient > >vis a vis dental/throat problems (and I DO recognize these > >are two different medical modalities - however what affects > >one can so easily affect the other...) > > > >I'd like to find a savvy dental specialist whose "savviness" > >and interest leans towards helping the patient with PD. > >I'd also like to find the same with a throat and neck specialist > >(and the latter two seem tot go hand in hand in the medical > >world). > > > >So far, I've been to the best that UCLA has to offer > >(Dr. Gerald Berke) and found the medical equivalent of > >a "one trick pony, " when it comes to helping the PD patient. > > > >I was able to get collagen injections into m y vocal > >cords, however, when my body began absorbing the > >collagen within 12 hours of getting the injections (sigh) that > >was that, as far as anything else in the pipe line other than > >conventional speech therapy (been there, done that) <ditto > >the Lee Silverman speech therapy> > > > >It wasn't the MD who told me about voice amplifiers - - - > >I came across the voice amplifier I've been using myself > >(and it does the job well), however, I DO recognize that > >to be another medical "band aid" that doesn't treat or > >cure the underlying problem(s). > > > >In my case, IF I wanna be heard when I speak (And I DO!), > >I'm gonna have to settle for being "Bionic Barbie," and just > >plan on taking my voice amplifier everywhere I go.. much > >to the chagrin of my younger (31 years old) daughter who > >recently asked me if I wasn't using the amplifier to get > >attention? (OYE!!! I can sure think of other ways to get > >attention, tho I must admit that this "bionicness" HAS > >caused folks to ask me a LOT of questions about WHY > >I need the amplifier to be heard. And I DO look at that as > >an open door to do a some PD advocacy. > > > >In a rush - contractor due any minute - sorry about the typos... > > > >Barb Mallut > >[log in to unmask] > >-----Original Message----- > >From: Edward Kleinmeyer <[log in to unmask]> > >To: [log in to unmask] <[log in to unmask]> > >Date: Thursday, January 06, 2000 9:36 PM > >Subject: symptoms of PD > > > > > >I go to neuroligest tomorrow for testing. Thought maybe someone > >could tell me, I have been having trouble chewing and my dentures > >don't fit well any more,also I seem to be choking a lot . I have > >had my dentures relined in the last 8 months but I seem to be > >right back where I was before. Is this just another symptom? I'll > >admit that I am scared. Shirley >