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Doubleup

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Doubleup last won the day on May 22

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  1. Doubleup

    Impulsive Disorder/Pathologica Gambling

    I tried Mirapex and it didn't work for me... Felt horribly tired and just could not overcome the side effects. I really wanted it to work but after almost 2 weeks of misery I gave up... Azilect on the other hand does help and I don't find I am impulsive, just less stiff and feel a bit better when I take it... Funny thing is in the couple years before any physical symptoms and no meds is when I was most impulsive... I bought cars, toys, fancy vacations... It was like I was seeking filling a void and once I got whatever it was it was still not enough... I researched this a lot and seems to be a part of our reward circuitry failing as the dopamine levels deplete... We tend to need bigger and bigger extremes to "feel that natural high" that used to come as easily as smelling a scent or a good song... Now for me very little gives me this sensation anymore... Guess sadly my dopamine is just too low... If the advise is for you or someone else I would suggest taking to the doctor about it for one... Beyond that I would also try to find a "free hobbies" to do that wont end in bankruptcy... There are gambling type games that do not involve money... Buy a Playstation, play cards with friends...
  2. Doubleup

    insomnia

    I wish I could help! Melatonin and even prescription sleep aids only "get me to sleep" however do not keep me asleep... 2-3am, I awake then I start with the light/REM sleep and random dreams and awakenings... It really sucks some nights... I do find some mind space apps do help me relax before bed. Headspace is one of them, I also use another called Calm... There are many designed to relax your mind... Would love to hear other tips as well
  3. Doubleup

    dyskinesia free l-dopa

    Is the $1000mo on youtube the Mars Venus Guy? I have researched his program and you can actually buy most of those supplements from Amazon or a 3rd party. He does have a couple of custom blends that could easily be replaced with something else. Does seem like a modified Dr Hinz program with extra support vitamins on top. Definitely a few hundred bucks a month even if you source everything from cheaper sources...
  4. Doubleup

    Parkinson's vs. LBD Diagnosis

    Hi Bill, I am sorry to hear about your condition. Thank you for your opinion, that does help guide me a bit and yes I will be seeking more answers from my doctors.
  5. Doubleup

    Parkinson's vs. LBD Diagnosis

    I guess this is an “unknown”. Any input appreciated if you have any ideas from your experience, scans or research.
  6. Doubleup

    Parkinson's vs. LBD Diagnosis

    I know they are both related diseases and thus it is possible for anyone diagnosed with either to have both. I am wondering however if you were to have an abnormal DAT Scan however a normal PET FDG Scan would that help rule out LBD and keep a diagnosis closer to Parkinson's? Or would it be very possible that LBD is just not detectable in the early stages? A lot of my symptoms seem more like LBD, thus my question
  7. Doubleup

    DaTscan and Diagnosis Difficulties

    Thank you, I suppose time will be the only way to truly diagnose this for me. My fears are more of possibility Lewy Body Disease since my scan was bilaterally abnormal and some symptoms are similar however I am sure there are plenty of other possibilities as well and shouldn't jump to conclusions.
  8. Doubleup

    DAT

    Yes, however you have to upload to a link, photo file sharing sites.
  9. Doubleup

    DAT

    Thank you Adam! Yes I agree from my research as well. That’s why I was thinking maybe Parkinsonism/reduction due to environmental exposure or something that could have affected me differently than typically PD. I did ask the Doc and he just said to maybe try another scan in a year and maybe a doc would have me try Sinemet. I asked more questions however haven’t heard back yet. So likely a just a waiting game for me. The scan was expensive however if I can’t get any answers I will likely retest at some point. For now I just don’t want to start a Med too early (especially since my movement is ok) or at all if it’s not the right direction for me. Thank you for your thoughts and kind words. God bless
  10. Doubleup

    DAT

    Thank you for sharing your story! It seems everyone has had different process in diagnosis and it is really frustrating to read what so many have been thru. Yes I have a lot of symptoms and happy to share, however most of them what are referred to secondary symptoms which of course can also have a number of other causes other than PD so docs like to explore and point to all those possibilities first. Movement wise I am blessed so far besides fine tremors and some intermittent stiffness more like “painful legs” however legs only on certain days especially when I over do it. I am often very tired, sleep is mixed and some cognitive problems. The fatigue is almost my number one issue. I went thru some depression however have found mental stability with diet changes and exercise however my reward system is very compromised. I no longer get chills from great songs or really feel “happiness” or excitement towards much of anything. I am happy for my kids and love making them happy for them but I am personally numb to it. It’s like I am observing everything but not absorbing. I have had MRI, DATScan and PET scans and movement tests. The only thing abnormal in alignment with PD so far is my DATScan which showed symmetrically moderate reduction of about 2pts. I suspect either an exposure causing this Parkinsonism or perhaps I was just born with a smaller dopamine system and with age it is slowly affecting my ability to compensate. My tremors don’t affect my ability to do my job but handwriting is getting worse and fine hand work is usually better earlier in the day for me. I would trade some motor function for some of my cognitive symptoms however that could be argued if were true I suppose. Docs so far have just wanted me to take Zoloft and Wellbutrin which neither did anything for me except introduce more symptoms so am no longer taking those. I have considered making an appointment with the hospitals neurology department that actually did my scan to see what they have to say as thus far my MDS even another at Stanford told me I don’t need to come back unless something substantial changes. Anyway sorry this is long, I could could go on and on as these issues have been (around likely for years) really affecting me about a year now and I live day by day not really knowing how to expect the next day to feel or what to do to next.
  11. Doubleup

    HERBBAL FORMULA FOR PD

    That is an amazing story, I do believe in herbal remedies in slowing and reversing some symptoms. I am not convinced herbal remedies will "cure" Parkinson's however with the right mix and depending on the individual I am confident that these programs can help. I googled Best Health Herbal Centre to read about them however nothing came up, do you have a link?
  12. Doubleup

    DAT

    Hello Adams, I am 45 and dealing with diagnosis difficulties. Wondering prior to your scan DX at 35 what were your main symptoms? How did they make diagnosis difficult enough to seek a DATScan? With your results did you get on meds right away and how did you find your current MDS? I am in a situation where I have high frequency tremors, an abnormal scan yet 2 MDS's telling me not PD...
  13. Doubleup

    DaTscan and Diagnosis Difficulties

    I truly thank you for your response. I realize I sent a lot of information and it is impossible to diagnose someone over the internet. I have been entertaining the idea of rescanning in a few more months. Based on my current symptoms and knowledge I still have a few remaining questions if you have any insight to help answer. 1. Is a abnormal symmetrical DaTscan very common? If it continues to be abnormal or continued for the worse “symmetrically” I would assume maybe atypical Parkinson’s, Lewy Bodies or some sort of toxin or exposure to an outside factor causing Parkinsonism...? 2. If I were to try Sinemet prior to motor function problems to possibly aid my secondary type symptoms would this be reducing the potential lifespan as to how long Sinemet would aid potential motor function problems down the road? It seems many say to wait to use L-Dopa type meds as long as possible as it only has a few years of benefit for relief of motor symptoms..? 3. If a patient took Sinemet and months or years later showed no evidence of Parkinson’s or Parkinsonism. Is there any potential harm if a healthy patient took Sinemet for a period of time and then discontinued? Wondering if the patients dopamine production would somewhat be reduced or diminished due to the use of the medication. I would assume some sort of withdrawal would be likely until things readjusted however I realize in asking this that it is a likely uncommon scenario to have an answer for. Thank you you again for any input you can help with!
  14. Doubleup

    Not Diagnosed, However Need Advise

    Thanks Dave, I was expecting a Dx so it was nice to get a hopeful break from that idea for awhile. I just need to put this in a box for awhile, stay healthy and just see what God has in store for me.
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