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Everything posted by adams234

  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.
  16. Parkinsons and sugar intake

    I have heard the same as Dianne, Personally before my Diagnosis, if I wanted to stop my sugar cravings or even change my diet, all I had to do was set my mind to it and I would stop eating said item. Now I set my intent to stop and I keep finding my self grabbing a cookie here, candy bar there, sneaking some chocolate chips and so on. I can not seem to control my need for sweets as well as I used to. One explanation I read was because we lack dopamine (the feel good chemical) our bodies or minds tend to replace it with the sugar high that gives us a sense of feeling good. Made sense to me. Going to ask my MDS if there is any studies on this.
  17. Early Symptoms

    As you sleep, your body will build up a store of dopamine, thus in the morning you will find that you feel better till you have depleted that supply.
  18. Music and Parkinson's Disease

    One of the instruments I have started to take up is from the Australian Aboriginals called the Dideridoo. I have read that many people with sleep apnea do much better once they learn it. I have just started but I find it to be a good work out, and very fun. No that is not me!
  19. Early Symptoms

    Just before I was diagnosed. I would wake up my feet were a little stiff but my movements were much improved from the night before. Generally a good warm shower and some stretching and I felt much better. I could get through most of the day before my stiffness and minor tremor would start up again. I first noticed this about 6 months before my initial diagnosis, then it lasted about 6 months after diagnosis. That is when I started taking medication and I felt 100 times better. Hope you find the answers you are looking for with your doctor appointments. If you do find out you have PD, in the mean time, exercise (cardio helps), try and eat healthy, get good sleep as best you can. Then stick with a good Movement Disorder Specialist who specializes in PD. Blessings
  20. lost sheep

    Hi Doug, I have been on here for almost 4 years, I have not seen Kim Again in about a year. FlyBaby changed his profile name and have not seen him post in forever. Welcome back. Adam
  21. This & that!

    I read them both, I think I enjoyed the first book more. Order of reading these only matter because he builds on what has happened since and things he talked about in the first one. I think reading the first one my add that "Ahh" effect to the why he mentioned things he did in his second book. Hope this make as munch sense typed out as it did in my head when I wrote. Feeling tired and might be typing gibberish. Blessings
  22. Loving Parent

    Loving, I was 35 when I was diagnosed, as I made the rounds telling parents and family my mother and I did not talk a lot about Parkinson's. Unfortunately I was diagnosis with PD just after my sister was given a diagnosis of MS. It wasn't until an opportunity to vacation with my mother did we really talk about Parkinson's and it effects on me. To my surprise she had been doing some research and reading up on the disease. She asked me what it was like. She wanted to understand what I was going through. I explained everything I could and I assured her that even though it is difficult and challenging that I am ok. I don't feel like a sick person. I encourage you when the time is right to just sit and chat whit you daughter. Cry together if you need to, but I bet you will both feel better in the end. Blessings Adam
  23. Tremors only -- could it be YOPD?

    Roses, On the day of my Diagnosis I told my husband that if he did not want to remain married to me because he did not sign up for this he responded with, "I did not marry you because of a preconceived idea of what our future would be like. I married you out of love and I will be by your side no matter what happens." My point of this is don't worry yourself over a future that has not happened. The future you imagine will never turn out the way you thought it would. If you love him and cant imagine not having him around, and he feels the same then you are meant to be together. Trust me when I say I understand your feelings. Coping with a diagnosis of anything life altering is stressful, going through the process of not being sure what is wrong is even scarier. We are here if you need to vent. Please don't worsen you anxiety on a picture of the future you have not experienced. I can promise you the future I envisioned 10 years ago is nothing like what I am currently living. It is so much better. I can honestly say that once I put my faith in the fact that I will end up where I meant to be, I am much happier now than I have ever been. Even though PD has been the most challenging a frustrating thing I have ever had to deal with, it has opened me up to new ways of looking at life. Be happy now, celebrate waking up and have who you have around you. Yesterday is in the past and nothing you do will change it. Tomorrow is a new day that has not yet been written, so live now, be in the now and love those who are by your side now. Blessing and Love and light to you Adam
  24. Restore Gold

    Ursodeoxycholic acid or (UDCA). Urso meaning bear bile is how the acid gets its name. It is found in bears stomach acids. There has been very little scientific studies into the use of the compound in the treatment of Parkinson's. You will find a small contingent of people on this Forum that swear by it. I my self have never tried it because it can be expensive to treat ones self with over the counter supplements. (I need my insurance to keep my cost down) I also have not tried it because I can find little to no evidence of its effectiveness on the symptoms of PD. Hope this helps Adam
  25. Tremors only -- could it be YOPD?

    Welcome Roses, I am not a doctor but with just tremors on both side and no other symptoms it leads me to believe the Neurologist may not lean toward a Parkinson's Diagnosis. I have seen a several people come on this forum who have used antipsychotics in the past with tremors. Generally Parkinson's starts on one side of the body and the tremor (if present) is a resting tremor that goes away when movement is initiated. Also there is usually other symptoms as well rigidity, slowness of movement, Gait problems, lack of smell just to name the most common at Diagnosis. I hope for your case, that it is the drugs and not Parkinson's. This is not a disease I would wish on anyone. I hope you find the answers you seek on the 8th of Feb. Stay positive because attitude is half the battle with any medical problem. Keep us posted. Blessings Adam