hi sues1

Discussion in 'Fibromyalgia Main Forum' started by 69mach1, Oct 6, 2006.

  1. 69mach1

    69mach1 New Member

    i just reaad you were dx w/parkinson's disease...

    you should go to a good neurologist...or even a university med school...my aunt has had it for years...probably for about nearly 20 years..i saw her last summer expecting to see her tremoring or something unusuall...but i really didn't see much of any difference other than we are getting older...

    it is caused from too low of dopamine..i'm sure you already know about...have you tried the mirapex....

    keep on hanging i'm sure there will be a cure sometime in the near future...

    i have often wondered if i was goign to get it...my mother has fm and my sister as well as myself...

    something is all wrong in all of our brains...they are trying to figure us complex souls out yet..

    i need to still take my klonopin...this weather is killing almost...colder out...and starting to rain alittle more..

    well good night

    jodie
  2. sues1

    sues1 New Member

    As always you are always there to help us. I appreciate your posting. Especally about your aunt!

    My regular Dr. (GP) DXed me. I first has a MRI and blood work. MRI did not show any lesions. I have so much pressure and pain in my head and eyes do not always focus. I have always said that this CFIDS/FIBRO was "in my head".

    I have mentioned my trembling hands and sometimes other parts of me to my GP and my Rheumy, they shrugged it off.

    I had a total head to toe seizure, trembling and jerking like and went to GP. It only happened that one time.

    My GP said Parkinson's and was writting me out a presc. I said Okay, where do I go from here? What specialist should I see,etc. What tests should I have? He said you will know by taking this med. if you have Parkinson's. Will not help you if you do not.There is no one for you to see.......!!!!

    I have been researching on the net and making phone calls to find a support group. Talked to some PD folks that I called and they were helpful. I have a name of a Neuro to call for an appt. now.

    Sad isn't it? To get a DX without any further help,( except some pills) or info!

    With this CFIDS/FIBRO for so many years, this latest is not as upsetting as people expect me to react. LOL. I reflect on that and realize just how much my life has changed before this. Not too much to give up if I have to. But all has been a training trial for me. I know to think for myself. To reach out to others and to find the Drs. I need.

    THANKS..Your posting was very, very uplifting and gives me a real lift. Love, Susan

  3. 69mach1

    69mach1 New Member

    they are on a cutting edge of this...and sadly to say, but in the same note michael j. fox is there trying hard with getting a cure for all of the people affected by this disorder...

    but honestly my aunt looked great...she could hold a good normal conversation...i have talked to her on the phone a few times...

    i didn't ask about any of her pain that she may experience...i guess i didn't want to bring it up...

    i know she has to take sleeping pills...to fall asleep at night...so that i am sure is normal for parkinson's disease...

    well i'm glad i could and can be supportive to you...as you have been w/me...

    lot's of hugs...and check out a local university medical hospital...if you were near u of m or maybe get a referral to mayoclinic...that is a good site to get info from for you...

    um,,,thinking here,,,i know i am not brain dead i am still thinking what the heck i was going to say....

    yes that was pretty crappy of that dr...he needs to possibly refer you to a psychiatrist that is good w/meds as well...it is a brain thing going on in your head...neurotransmitters are too low....

    they need to give you some l-dopamine or mirapex..

    oh now i remember...if you haven't applied for ssdi/or ssi do so now...

    my aunt applied back in michigan years back and my mother said she couldn't believe my aunt was approved so quickly had her check in like month in the mail...she did hers online...
    jodie
  4. sues1

    sues1 New Member

    I have just started to hear of same that also has done well for many years.

    I already get PERS (Public Emp. Retirement Service) thru disability part. I feel blessed there. Also good medical coverage with it.

    Two things that are to pertain to diganois is smaller hand writing and depression. It is said that depression is usually the first sign of PD.

    I am rarely depressed. I will have a day every so often, but it does not last at all. Not a problem. I feel that is normal for anyone. Let alone having CFIDS/FIBRO.

    Actually my hand writing has gotten larger and messier. I will find out about myself more. When previous Drs. shrugged it off (tremors), I chalked it up to FIBRO.

    You have made my day and I know this good feeling will continue, THANKS..........Love, Susan
  5. 69mach1

    69mach1 New Member

    system...so you know they couldn't have her possibly driving bus w/kids on it...

    she did get her money from the school disability dept as well...my mother said she never reported to ssa...which she was supposed to..but last i knew she never got caught...

    not suggesting that you do that...just stating a fact...

    hugs to you and we had to have test about parkinson in pshy class this week...

    just hang in there...

    who knows maybe i can figure out what is causing all of this malfunction in our brains....

    i would suggest try reading and working puzzles...of sorts to keep the regeneration of neurotransmitters working...the theory of you use it if you don't lose it...they state in my text book usually we retain everything until age of about 60...then we start losing some slowly...in a normal brain...

    jodie
  6. sues1

    sues1 New Member

    First I got FIBRO...few mos. later that infamous Flu that does not go away (CFIDS). Dr. that DX retired. I went to some really horrid drs. after that. I could not focus, had tunnel vision, sometimes red or blue vision. If you had asked my name, I would of said, I will get back with you later on that".

    My above average vocabulary went to a 2 yr. old level. ETC.

    I started taking B-12 vitamins and they helped me a tad. I got crossword puzzles and worked them. It was super hard, because of my fibro fog. Also did not do crosswords prior.I sometimes took 8 hrs. to do one easy puzzle. (now do one in newspaper in 5 minutes). I went to water excercises. Many things.

    Drs. were amazed at the things I came up with on my own, that is the ones that did not act like I was mental case!

    I bought tons of books, read them when my eyes would focus.
    All helped. I will not drive when I can not do it with regards to safety to others. I do not drive far now because of pain and such. I still do not know how to get to some towns around me. If I drove more I would know. I used to go to them. But why do I need to know now? I do not add stress to my life in trying to memorize what I do not need. I get headaches if I try to hard.

    Thanks sweetie............Love, Susan

    PS at this point the PD does not affect my driving though, so maybe your aunt had no problems. Good for her.[This Message was Edited on 10/08/2006]