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Thanks Joan, I go to my family Dr. on Jan.20th. so I am going to talk with him . He has helped me more than any other I have been to. He listens to me and isn't afraid to refer me to whom ever (we) think I need to see. Shirley P.S. All you PDSand CG are great. Even Greg with his dry humor. Don't quit. -----Original Message----- From: Joan Hartman <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Friday, January 07, 2000 4:34 PM Subject: Re: symptoms of PD/Looong Reply >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 >>