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Everything posted by Doubleup

  1. 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 ----------------------------------------------
  2. DAT

    Yes, however you have to upload to a link, photo file sharing sites.
  3. 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
  4. 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?
  6. 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...
  7. 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!
  8. My Story I am 44yrs old and have not yet been officially been diagnosed with Parkinson’s yet however have been fighting Parkinson’s like symptoms over the past almost year now mostly since June. I was on Adderall until end of May this year for ADHD and feel its process was maybe masking Parkinson’s or also perhaps even somewhat creating it. My symptoms in last November that I recall were digestive (constipation) with some low drive mild depression and just feeling off/tired even on the meds on certain days. I was advised to exercise and improve my diet and keep on the meds 5mg twice daily as I was prescribed Adderall for the past 1.5 years as well as a prior two year period toward 2005. I began realizing I was feeling a reduced effect from the drug earlier this year and I realized I was getting tired in afternoons and drinking a lot of coffee to compensate (with little affect) as well as some digestion constipation problems. Toward end of May I quit Adderall completely including coffee and it has been very rough. Initially I didn't link the way I was feeling to quitting Adderall, I went to my primary doctor whom actually wanted me to stay on the drug however ordered a ton of labs and referred me to a GI. All of which tests came back without any findings... My Primary Doctor now understands and supports my choice to stop Adderall and just warned it may affect my work for a while and I will have my ADHD symptoms to deal with. My symptoms since quitting Adderall were initially worse digestive constipation followed by some fatty stools., sleep loss (awake at 1-2am with difficulty after that), high frequency finger/hand tremors showed up a little later, anxiety, some depression, emotional, lowered libido and just an overall desire to do "nothing" even when I was thinking of all that I needed to do. When I read about the neurotoxicity if the drug I am sickened that I did not research it's potential effects sooner. Many symptoms I have now are in alignment with Parkinson's however I am told it could take months for my body to adjust and tell me if it is Parkinson’s, withdraw symptoms or both. Today I have been doing a no wheat low carb diet and really watching my sugar. I have been more religious with my diet since then however still making adjustments. My blood pressure is low now and blood work looks the best it's ever been and all tumor and inflammation markers are low so I think my hard work is paying off. Exercise is something that has been difficult to be consistent at. There are days I can barely get my kids to school and time just wisks by while I am feeling miserable then others where I can just throw on my shoes and go for a run and lift some weights. I am working on getting more consistent with this and hopefully improve or at least slow down whatever is going on. Managing my symptoms today: The tremors are manageable for now as long as I avoid stress or coffee. Hands and feet a little tingly at times however not bad. Muscle tightness on some days and none on others Anxiety kicks in overdrive on some days and not on others. My mental drive and energy are so up and down, seems I will sometimes get this 2-3 day burst of almost normalcy and then will just have a crash day where the thought of running a simple errand sounds like a funeral. Apathy, Depression and Finding joy in things is somewhat sadly lost, I do things and observe things that make my kids happy and smile for them and say the right things, I just hardly “feel” it like I used to. Sleep is probably the worst part right now. Melatonin helps get me to sleep, 5htp, magnesium, Theanne also in my evening supplement routine... However, I consistently awake near 1-2am and just somewhat rest with my eyes shut. Mind wandering sometimes other time just in like a half sleep state... Usually close to wake up time is when I finally feel like I could maybe get back to deep sleep. It's no fun. My Fitbit will register about 6.5-7hrs of sleep on a good day however some of that is just me laying still... I have been taking 5-htp which seems to slow the tremors some it seems and L-Tyrosine seemed to help balance energy a bit on some days; B vitamins Omega 3, Vitamin E, D CQ10 and multi vitamins which all do not give any direct noticeable effect. Neurologists: I have consulted two online video Neurologists that both said they do not feel my symptoms are Parkinson’s related, that this is more Anxiety related, however those were very impersonal and short. I visited with another Neurologist in person at Sutter who basically said he doesn’t see Parkinson’s however I needed to get my Anxiety and Sleep issues under control before he could diagnose me further. That was not very helpful.. Then my local Neurologist spent a good hour with me. He was mystified with my symptoms. The only movement issue he was questioning was my left hand I was not quite as accurate at opening and closing it fast like my right. For my mood he wrote a script for Wellbutrin however I don’t feel good about taking it after reading many enhanced tremor side effects and the fact it also alters Dopamine function. I requested a movement specialist and maybe a DAT scan and he said all he could do was refer me to Stanford so now waiting for that… This is all a process with a lot of waiting and taking one day at a time, praying this is mostly withdraw symptoms however 3+ months off the drug now and reading deeper into Parkinson’s many of my symptoms are early stage complaints. I may be a year away from the real movement symptoms or a true diagnosis. I must prepare for that if need be, in the meantime just doing the best I can with any advice you may have..
  9. 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.
  10. 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...
  11. 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
  12. 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.
  13. 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...
  14. 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.
  15. 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...
  16. 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.
  17. Not Diagnosed, However Need Advise

    Thank you. I am going to wait for my scan then decide treatment options after that. I have to stop the welbutrin a few days before the test as it is. Just found out my insurance won't cover a dime of the scan so that is a big hit. Very expensive test here in CA I can make payments at least and I suppose if it helps determine any future course of treatment then there is no price on our health.
  18. Not Diagnosed, However Need Advise

    Got my DaTscan scheduled for the end of the month. They told me it takes a week for results which is weird as I have read many here that seem to have gotten results on the same day? I am really nervous however at the same time just the way I "feel" has made me accept the possibility of PD and am prepared mentally in a way to hear that result... PD or not I just wish I had Apathy for anything. I am gettting what needs to get done even with my scattered mind however I am only doing it because it has to be done and of course for my kids. The depression that is present is like nothing I have ever experienced. I see my kids happy and I smile "for them" however internally is almost as if I am not even present. I started welbutrin last week and the first few days did seem to help, yesterday I crashed though. My MDS wanted me to try this and report back. I have to stop taking them before the scan though which will put a little bump in allowing the meds to work for me. Not sure if this is the best med however I will try almost anything at this point. Prayers and thanks for listening.
  19. Not Diagnosed, However Need Advise

    Got a great MDS doctor that spent a long time with me today. Physically my tremors are unlike "typical" PD however since my symptoms mainly developed after stopping medication he said this is an unusual situation that very rarely comes up. So now we have moved on to a DAT scan which will take awhile to get approved and scheduled. He said this should help guide us... Then he seemed reserved about using the scan results to make a diagnosis regardless of outcome as he puts more weight on classic PD signs or documented progression of symptoms than DAT scan results. Not sure if that is common practice. So not sure good or bad news however at least I am more informed, patience and time will likely be the answer here for me. Thanks all for listening and hope everyone is well.
  20. Not Diagnosed, However Need Advise

    I just managed to get a MDS appointment for next Monday! While I am thinking it is likely too early in my condition to get a true diagnosis just yet I am relieved to have this appointment vs December. I will surely update everyone next week and continue to pray for healing of us all.
  21. Anxiety/Tremor Help

    Do they ship to the US?
  22. Not Diagnosed, However Need Advise

    Thank you for the clarification. I am sorry you went thru such an ordeal for such a mixed result. I believe the hospital that I am scheduled only has PET from what I read, however maybe the DAT is just not on their web site yet. I have heard that in some cases they will use cognitive complaints to have insurance cover PET under Alzheimer's screening however as you said likely pointless in early PD. I have also heard of "SPECT" scans which is commonly advertised with Amen Clinics, I almost signed up for that however I do not believe they diagnose PD and it's very expensive.
  23. Not Diagnosed, However Need Advise

    Thank you LAD, good read!
  24. Anxiety/Tremor Help

    I feel for you, I have similar symptoms and have not been diagnosed either. Anxiety is not your friend right now PD or not. First off I have cut all sugar and caffeine from my diet. Secondly there are a number of supliments you can try. I have had positive results from 5-Htp, Gotu Kola, Ashwagandha and Melatonin for sleep. You probably will only be able to find 5-Htp and Melatonin at your local pharmacy. The others I had to order. 5-Htp can be taken in the day or higher doses at night to help sleep. Keep up with your other supplements as well. Most importantly keep your mind calm. The more you research PD and other possibilities your mind will race only adding to your anxiety and symptoms. I have done this and still battle how much time to research. Actual PD can take months maybe even years to diagnose it seems so best thing we can do in the meantime is learn to control the anxiety, exercise and trust our doctors.
  25. Not Diagnosed, However Need Advise

    Thank you EllaAngel and sorry for the mix up! Thank you so much for the long explanation some of it I can definetly relate to! I am surprised with all your testing that you never did a Dat or Pet scan... I guess somewhere in my twisted mind I am both convinced and scared that that is what I need to determine my true condition. Anxiety is very POWERFUL and I am finding my best days right now are when I somehow manage to curb it. I wish there was an easy answer for anxiety. As there are medications they all seem to be trial and error with potential withdrawal issues when come time to try to stop taking them. My tremors definetly increase with any anxiety or type of stimulant. I did try some wine (non drinker) and it really made me more "buzzed" not relaxed at all so didn't help tremors much. I don't think they got worse though. I guess next time if I try will need something with less sugar potentially... Seems like my worst days start off and end: Low Energy - Anxiety - Tremors - Depression - Apethy Good days: Near Normal Energy - Exercise - More Clarity - Less Anxiety - Reduced Tremors So regardless of what I have going on Anxiety is a huge trigger to a good or bad day. I have also read that dopamine is a trigger for anxiety when it is low. If you can boost dopamine anxiety diminishes quickly. One day at a time here. I am trying to read less about this and just eat healthy, exercise when I can and wait out this long process.