Jump to content
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    


  • Content count

  • Joined

  • Last visited

  • Days Won


Doubleup last won the day on October 3 2017

Doubleup had the most liked content!

Community Reputation

4 Neutral

About Doubleup

  • Rank
    Advanced Member
  1. DAT

    Yes, however you have to upload to a link, photo file sharing sites.
  2. 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
  3. 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.

    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?
  5. 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...
  6. 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!
  7. Hello! I am a 45yr old male and really hoping for some help as I am trying to find some clarity with regards to my symptoms and an abnormal DaTscan and would appreciate any guidance in my diagnosis as well as recommend if early treatment such as Sinemet or Rasagaline would be of any benefit this early in my symptoms and/or potentially delay progression/onset of further movement disorders? I have been to multiple doctors this past year including 4 neurologists, 2 of which specialize in movement disorders, one of them was from Stanford. All doctors spent a lot of time with me in going over my movement and symptoms and disagree with the findings of my scan and do not diagnose Parkinson’s. At this point I don’t have motion disorder symptoms in alignment with Parkinson’s, however I do have very high frequency hand tremors in both hands when extending my fingers out in front of me. Sometimes they subside when I am very calm or tired. They are not bad enough to interfere with my daily activities at this time. Only other physical symptoms I have is sometimes upon awakening my thighs and glutes can both be pretty tight and almost burning sore following a very long hard work day almost more from fatigue than muscle soreness if this makes any sense. This subsides typically after rest and/or after getting up and getting moving. The majority of all my symptoms came to light after stopping Adderall. I was on a low dose 5mg twice daily to treat ADD like symptoms and concentration issues for 2 years back in 2005-2007 and then again late 2015-June 2017. I quit after I began nearly falling asleep in the afternoons a couple hours after my afternoon dose as well as some odd associated headaches during the last couple month on Adderall. I felt like I “ran out of dopamine” for lack of a better term. Once I quit the medicine and had a horrible couple months of PAWS followed by continued symptoms that are still present however somewhat manageable now. After much of my own research I requested the DaTscan specifically against my doctors advise as I read deeper into my symptoms and related them to Parkinson’s secondary symptoms. Testing Performed: DatScan 10/17 Abnormal (See Below) MRI 12/17 – Normal PET Scan 2/18 – Normal Blood – All Normal except slightly elevated Cholesterol and Low Testosterone Possibly Related Symptoms: My testosterone levels have dropped below normal in 2 of my last 3 tests. Some Muscle Tone changes/wasting Trouble sleeping (awake around 2-3am nightly for about an hour without taking a sleep aid) Concentration/Cognitive issues. Forgetfulness and foggy thinking Mild depression and anxiety that comes and goes Low Motivation Some Apathy and Reduced Emotion/feelings of Emotion Tiredness/Fatigue My doctors conclude that bilateral reduction in Parkinson’s is extremely uncommon and that my symptoms are not in alignment with Parkinson’s either. I was told that these tests are visually subjective and it is unknown exactly what size a dopamine system we are supposed to be born with and that mine might just be smaller than normal (like a smaller brain) and that I most likely am still be recovering from the medication (chemical imbalance) and/or have depression. For me and in our discussions, there is also lot of unknown factors relating to Adderall/Amphetamine neurotoxicity and if potentially the meds caused my condition or if the medication just unmasked a preexisting condition? Adderall and Amphetamine withdrawal have a lot of the similar symptoms to Parkinson’s secondary symptoms as well has also been known to affect the results of DaTscan results in some of my research. I am pretty much at a loss of what to do at this point other than just wait it out to see how symptoms progress or change however I feel pretty terrible most of the time and it’s like my life is on hold without really knowing what to expect next and having a treatment plan in place or at least in mind for the future. Test Results (photo below also, a little blurry however that is one of the better ones): ----------------------------------------- Findings: Abnormal pattern of uptake is noted bilaterally with increase in background uptake. There is moderately reduced putaminal uptake bilaterally. Rounded morphology of uptake is preserved in the caudate nucleus, and morphology of uptake in the putamen is also preserved. Quantitative values are specified below: Striatal Binding Ratio Z Scores: Right Left Striatum -2.44 -2.23 Caudate -2.14 -2.04 Posterior Putamen -2.32 -2.01 IMPRESSION: Abnormal SPECT DATSCAN STUDY: Significant reduction in quantitative striatal uptake bilaterally exceeding two standard deviations. Qualitative morphology of uptake is preserved ----------------------------------------------
  8. 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.
  9. Not Diagnosed, However Need Advise

    Ellaangel2 If you read the beginning of this long thread I was on Adderall for ADD about 1.5 yrs before this and most of my symptoms began shortly before stopping these meds and the stronger ones after. My gut tells me the neurotoxity of the Adderall or something else has damaged my dopamine system over time. Which may or may not lead to PD. Howerver the doctor is optimistic and has found some supporting information that if a DatScan if done too soon after stopping these meds that the Dat binding maybe reduced due to the prior meds binding to the Dat transporters blocked the tests binding and thus the test may not be accurate. So would have been best to wait on the scan longer I suppose, I really have nothing else to do now besides eat healthy, exercise and wait this out. 6mo feels like a long time... I just need to find a way to get my depression down and find a little joy in each day so I can stop my constant thinking about this. It's easier on the days I have decent energy levels...
  10. Not Diagnosed, However Need Advise

    Otolorin, yes I agree something is wrong. If the Dat is accurate it just isn't following the progression of PD. So either some other Dopamine disorder or Parkinsonism. The theory now is that past meds I was on is maybe blocking some of the Dat binding of the test reducing what is showing up. I somewhat disagree just because I have so many non motor symptoms to support the accuracy of this test yet my movement is fine so far... besides odd tremors Perhapse with time this will either progress to PD or if this was caused by something I exposed myself to I may just be stuck with an impaired dopamine system. I just started back on meds for my non motor symptoms as they wanted me off al meds for the scan. We will see if they help, thank you all for your support and thoughts. Frustrating process and frankly can't afford a second scan. Just going to see how I feel in 6mo at this point
  11. Not Diagnosed, However Need Advise

    Still no real answers... Got my DatScan results "abnormal" my reduction is a moderate reduction "bilaterally" meaning symmetrical. This not consistant with Parkinsons at this time. So I definitely have something going on with my dopamine system, I guess the question is if it is from the meds and this will improve or will it continue deteriorate as in PD? Doc is recommending a retest in 6mo.... And/or see how I feel in 6mo.
  12. Not Diagnosed, However Need Advise

    Thank you for the support and encouragement. I guess my only fear is to find out what I am already in the process of accepting possibility of having PD. So really the only remaining issue is money which is important however even if I can't afford it accurate health information is priceless. Everyone I know and likely everyone on this forum has been subject to less than accurate medical treatment at least once in their lives and likely would give a chunk of savings in those scenarios to get things on track. I feel like if docs or MDS's put more weight on secondary symptoms I would be diagnosed already however we've talked a lot here over the weekend and are going to proceed regardless of price rather than waiting for stronger physical signs to show up. If it's PD I am fairly young and will be in an early stage so I at least have that going for me. I will just have to try combo's of antidepressants to overcome my apathy and depression symptoms and see if I can put off L-dopa for as long as possible. Which I am not sure what has worked for others however it seems the depression is caused from low dopamine so without that I am unsure how the depression will subside without L-Dopa? Just wondering about that...
  13. Not Diagnosed, However Need Advise

    No I have not done the levodopa test. He mentioned maybe trying that in the future. I have tried Mucuna Pruriens on my own in low dose on bad days and it does seem to get me out of my funk a bit, however no effect on my tremors. I do believe I would have to at least triple what I have taken for a few days to reduce tremor from what I have read. I don't know why my MDS can't diagnose me just yet with other methods. Maybe it's just too early... If I get a 2nd opinion that will take months to get in to see another... I am almost thinking of canceling the scan however I want an answer just as much. I do feel like in 6mo I would likely have the PD diagnosis if I waited for more symptoms... However the uncertainties thru the holidays would be hard and without the full ability to treat my conditions. I am exercising and eating well, it's just certain days that I really "crash" so to speak. I feel like for lack of a medical term have fluctuating or surging dopamine. Some days I feel almost normal and literally think to myself "this is ok, I could do this the rest of my life without meds" then a couple days later it takes everything out of me just to get to work and even at that I am only half functioning and avoiding anything difficult. My cognitive side is really impacted and I really hope this improves. Without major motor issues I am uncertain if levodopa would even be prescribed for my non motor secondary symptoms at my age of 44. Maybe an argonist or just trial and error or antidepressants... Thank you for all your support. My anxiety is ok right now, I just want to feel better and be "present" for and with my family more than ever.
  14. Not Diagnosed, However Need Advise

    Thanks Otolorin, I have seen a Neuro and an MDS. My minor hand tremors and some newer leg soreness and calf cramping "motor symptoms" are just not enough to diagnose. He said I would need to keep coming back every 3-6mo to track progress. On the "non motor" I have a laundry list. Trouble sleeping, some reduced sense of smell, avoiding any difficult situation, apathy, depression, anxiety, short term memory lapses I could probably go on. I have gotten a better handle on my anxiety this past week or two... The rest remain. Another odd thing I have noticed is coffee which I have not been drinking much of for awhile now does absolutely "nothing" I could drink water and feel near the same. I took a decongestant also (the good kind) hoping to enhance some smell and zero buzz effect. I used to feel these things and that is literally gone. Very weird and not likely anyone's first complaint here however it is real for me. Maybe I am just crazy; I'd probably be willing to spend a chunk of money for a doc to tell me that or anything at this point. Pretty lost of what to do without this test at this point, I will have to decide by the end of this weekend if I am going to cancel...
  15. Not Diagnosed, However Need Advise

    I understand what you are saying and believe me I could spare the cash. As every PD case is different, my symptoms are currently very strong in the "non-motor" category to the point many days I am non-functioning. Not sure any doc would put me on PD meds without major motor functions however knowing if this is PD or not could help direct medications one way or the other to help me "feel better" and get back on my feet so to speak. I am also at a turning point in my business affairs as well as some large personal projects that if I were planning for a PD future I would likely rethink things drastically. I could wait another year for symptoms to change to save the money however it is difficult to "move forward" in the present so to speak. Then I suppose there is the accuracy of the test to consider, from my reasearch however it seems to be pretty accurate. Especially it seems a scan supporting a diagnosis of PD is not argued much. Seems the negative tests are the ones more subjective that sometimes years later the individual has PD.