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adams234 last won the day on March 12

adams234 had the most liked content!

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About adams234

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    Advanced Member
  • Birthday 02/20/1979

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    Rochester, NY
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    Home Repair, Camping, Outdoors.

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  1. Doctor says symptoms 'consistent with' PD

    Pixel Paul, Sorry for joining in the welcome party so late. Your story sound familiar to almost all of us. I hope you find some relief from the Azilect as I did when I first started it. Hang in there, the first year is rough. Just know that the life you thought you would have hasn't ended, it just looks different. I can honestly say that after I finally adjusted to my new reality I am more happy now than I have ever been. Blessings Adam
  2. DAT

    I see you said that you had symmetrically moderate reduction. I wonder if the doctors suspect something other than Parkinson's. From what I have researched and heard from my MDS generally people have reduced uptake on one side greater than the other. Example, My DatScan came back with "Moderate reduction on both sides with the left side greater than the right. Impression is consistent with a diagnosis of Parkinson's based on clinical results." I am not a doctor and this is just my opinion based on my limited knowledge. I would post your results in the ask the doctor section with a list of your symptoms and see what his advice is. Blessings Adam
  3. Young onset PD testing

    Unfortunately the best and most common test is to try Levodopa, if you respond with good results then they are sure you have Parkinson's. There is a DatScan, it is very expensive if you don't have good medical coverage. The DatScan will not say you have Parkinson's but it will rule in or out other diseases that can mimic Parkinson's. A doctor will not order one unless they are not sure what you have. If everything in the clinical exam points to Parkinson's type of disease they will try the Levodopa first and see how you react. If your side effects are nausea try eating some crackers or toast when taking your pills. I agree with LAD, a question in the ask the doctor forum may give you a better answer. Hope this helps Adam
  4. DAT

    Doubleup, The first Neurologist I saw was a general neurologist who had and treated many Parkinson's patients. I went to him after I noticed that my right arm had stopped swinging, my right hand would curl up into a fist, and I had stiffness in my neck and shoulders. I also noticed a minor tremor in my right middle finger. He said he strongly suspects that I have PD after going through a battery of test. He then recommended that I go to the University of Rochester's Movement Disorder Clinic. His hope is they would want to do a DatScan, the only test he did not do and did not have the ability to do. He was also hoping there would be a study I could join since I was young and a rare case. The first MDS I saw I was not impressed with. She did order the DatScan because of my young age to make sure I was not have some other issue. I went through with the DatScan and received a copy of it in the mail a week later. It also included a results letter from the examining neuro. It stated that my scan was consistent with PD if clinical results suggested PD as well. I then got a call from the clinic asking if I would like to join a study. I said yes. On my first study appointment they did the clinical exam then looked at the DatScan results and accepted me into the study. The study lead neurologist was accepting new patients so I had her become my main MDS. Once I was part of the study I had to remain off meds till I had completed six months of the study. It was a struggle but I stuck with it. Once I had my Six month study appointment we started with Azilects then 2 months later added sinement or C/L. I felt so much better. The search is tough, some much of the diagnosis process is subjective and base solely off of a neurologist opinion. I hope you find the answers you are looking for. Can I ask. Are you having other symptoms as well as the tremors?
  5. Sinemet Question

    I agree with gardener totally, I did significant research before deciding to take Carbidopa/Levodopa aka sinemnet. There is no evidence that suggest C/L is solely responsible for dyskinesias based on the amount you take in a given day. I have met and talked to several people who take over 1000mg of c/l a day and do not have dyskinesia. Dyskinesia happen with a combination of disease progression and use of sinement. One study that is in its infancy suggest that dyskinesia happen when a chemical in the brain called GABA starts to diminish because Parkinson's disease has progressed to a point to affect its production in the affected part of the Parkinson's brain. The brain Chemical GABA acts like a throttle on a car, it meters how much dopamine reaction is need when the brain sends a signal. When that is no longer present the signal gets over intensified and you get dyskinesias. Remember, when big pharma came up with there synthetic dopamine called agonist, they spent millions discrediting C/L so they could reap billions in profit for their new creation with terrible side effects. This stigma still exist today even though big pharmas studies have been disproven. Want you to have the whole story when you make your decision Blessings Adam
  6. Sinemet Question

    Tjon, I agree with the above statement from Beau's Mom. In my 2.5 years experience with sinement I can tell you that I get about 12-15 hrs of on time with my current regime. I take 1.5 pills of 25/100 CL aka sinement and 1mg pill of Azilect at 7am then I take 1 pill of 25/100 CL every 3hrs till 7pm. When I go to bed at 10pm I take a 1/2 pill of regular CL and a pill of 50/200 extended release for over night. This has worked very well and I can say that for about 10hrs of the day I am 95% free of symptoms then in the evening when I am tiered I am about 75% free of symptoms till bed. My thinking is why be sore and stiff when I don't have to be. I hope this helps. Feel free to ask any question you would like. Good luck Adam
  7. DAT

    Thanks for correction. My mistake. I wanted to type will not but forgot the not in my statement. Good catch. I agree with every statement on here. The Scan is expensive and not conclusive. I did it because at the time I had great insurance that coved the whole thing with a $20 copay. It also helped me get into the isradipine study and find my current MDS. All was not lost in having it done in my case.
  8. DAT

    A DATScan is used to help differentiate between essential tremor or a possible parkinsonian symptom. On the day of a DATScan you will go in 4 hrs prior to the actual scan. They will give you an iodine drink that taste like stale water and then inject you with a radioactive tracer. It is not enough to hurt you. Then you go home and 4 hours later you come back for the scan. In that 4 hrs the iodine stops you thyroid from gathering the radio tracer and allows it to pass the blood brain barrier. Once in there the radio tracer attaches the dopamine uptake cells in the substansia nigra. When they do the scan using gamma radiation it shows up as bright spot on the picture of the brain. They then compare the size shape and brightness to determine if the brain has a loss of dopamine cells or if something else is going on. Correction It wont tell your doctor It will tell the doctor if you have Parkinson's or not but will help them determine a better diagnosis based on what they have found clinically. Hope this helps Blessings Adam
  9. Rasagiline and other drugs

    Mary C, You are correct. Azilect stops the cells in the brain from reabsorbing unused dopamine and breaking it down. Thus raising the available dopamine to be used. As far as Carbidopa, it is added to Levodopa to help ease nausea from taking levodopa straight, it also stops an enzyme in the blood that breaks down levodopa thus allowing more of the dose to cross the blood brain barrier. Hope this helps clear some of the unknowns. Blessings
  10. Rasagiline and other drugs

    Sorry for late reply Superdecooper, Been a crazy few weeks I still take it because I feel I am benefitting from it. My doctor and I believe that is helping so we will stick with it till we are proven otherwise. Since I was able to get my copay for Azilect to $10 for a 3 month supply I felt no need to experiment with stopping it. One of those deals if the regiment is working don't mess with it. If my MDS suggested stopping (backed by a good reason) then I would give it a try. My MDS had me start with Azilect since I was part of the Isradipine study. Her belief was that the 2 drugs combined might slow my progression. I have been in the study for just over 2.5 years and on both drugs the whole time. According to my updrs scores my progression has been slower than what they would expect for someone my age. When I first started Azilect it was the only anti-Parkinson's med I was taking. I first notice that my mood was greatly improved. It was like someone lifted the cloud of dread that had been following me around. Then I noticed that some of my stiffness was decreased. This made it a lot easier to walk. I can remember walk over 5 miles the day I felt it working. That is why I am still taking it. Hope I didn't ramble on to long Blessings Adam
  11. Duopa Pump Users-

    Noah, There are 2 enzymes in your blood that break down levodopa before it gets past the blood brain barrier. Carbidopa that is included with sinement and rytary takes care of the more agrresive enzyme. Comtan will neutralizes the second one thus allowing more of your regular dose of levodopa to make it to the brain. Hope this helps. My MDS has suggested this to me at my last appointment. We are keeping it as my next med adjustment should I need better coverage of symptoms. So far the last adjustment has been enough. Blessings
  12. This & that!

    Some days I fight, Some days I cry, Some days I get out bed and wonder why, But every day I walk with my head held high. Because I know, I will get by. Blessing Everyone.
  13. Rasagiline and other drugs

    Good luck Superdecooper. I have already hit my max deductible thanks to Azilect. Now my insurance pays for things. Makes me feel better that they get to spend money on me.
  14. Got my 23andme results

    Anything that adds stress to your body will make symptoms come out more. It can be a cold, stomach bug, work, friends family coming over, not good sleep, ect. I know when I am sick or have friends coming over for a gathering it increases symptoms.
  15. Welcome to the club

    Congrats Superdecooper I hope you find good results with them.