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PatriotM

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PatriotM last won the day on August 23

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  1. Trying Sinemet

    Dave, My big problem now is that I'm up every 2 hours each night to urinate. So far, I still feel like I'm sleeping enough, but with the MM I was sleeping through the night. I'm considering taking one dose of MM at bedtime to see what that does for me. Of course, that doesn't help me if traveling or in the hospital. So, I may have to go to Flomax. One more drug - just what I need!
  2. I'm still wondering why you think the diagnosis of Benign Fasciculation Syndrome is wrong. I read the symptoms associated with BFS and they look like your symptoms. Why not BFS?
  3. Trying Sinemet

    otolorin, I titrated up from 1/2 tablet to 1 tablet 3 time a day. I will probably titrate back down slightly. The MDS wants me to take enough to control symptoms but no more than necessary. The first dose in the morning seems to be most important to me and I am going to try going back to 1/2 tablet in afternoon and/or evening. I have been effectively treating bradykinesia and rigidity with exercise, so I don't really know if the Sinemet has helped with those. The Sinemet is not working as well as MM for urinary urgency/frequency, fatigue, and sleep. Dave, I have taken Flomax occasionally for kidney stones. I may be forced to talk to the doctor about taking it on a routine basis. I'm encouraged that it is working for you.
  4. Trying Sinemet

    I'm now over 4 years since diagnosis. Exercise has been my primary medication for these past 4 years. About a year ago, my tremors were significant enough that people frequently asked what was wrong with me. The tremors made me look weak (sick), which is simply not acceptable to me. I began taking medical marijuana about a year ago and was very satisfied with the result. Not only did it improve the tremor, but it also virtually eliminated my frequent urination/urgency issue; lessened my fatigue; improved my sleep, and much more. All this improvement without side effects. Unfortunately, as time went on, I discovered several problems with using medical marijuana as the primary PD drug. None of these problems were related to medical issues, but rather legal and other practical issues. I discussed this in a recent post. Therefore, at my last MDS appointment, I discussed these issues with my MDS. He recommended trying Rimantadine. It had plenty of side effects but no effect on my tremor. He suggested trying Sinemet, which I am now doing. I'm taking one 25/100 tablet 3 times a day. One at 6:30 am. One at 11am. One at 4 pm. I was hesitant to carry medical marijuana in my vehicle and therefore often didn't take my medication on a very good schedule. With Sinemet, I can obviously keep Sinemet in my vehicle and therefore take my medication on a better schedule. The only significant side effects I've noticed with the Sinemet are nausea and vivid dreams (including nightmares). Sinemet does a surprisingly good job on my tremors, but doesn't do anything for my frequent urination/urgency issue. I also am not sleeping quite as well with Sinemet as with the MM. In summary, I believe that medical marijuana is the better drug. However, due to the legal and practical issues with marijuana, I am planning to reluctantly stick with Sinemet, at least for the foreseeable future.
  5. Hello Sconklin87, Welcome to the forum! Your symptoms don't sound like PD to me. PD normally starts on one side and progresses slowly. Moreover, PD isn't roving twitches. I've never heard of BFS, but I looked it up and BFS does sound like the symptoms that you described. Why do you think it is PD rather than the BFS you were diagnosed with? I also wonder if the doctors have considered chronic traumatic encephalopathy considering the number of concussions you've had?
  6. New guy here - a journey I'd like to avoid

    I'd say that the tests are to rule out other more serious things, like a brain tumor, MS, etc. Once all that is ruled out, then they will be able to more seriously consider PD. Even if you are diagnosed with PD, I wouldn't freak out. Millions of people each year get a diagnosis MUCH worse than PD. You can still live your life relatively normally with PD.
  7. Not Diagnosed, However Need Advise

    Yes, humans like to know what is wrong with them. However, worse than not knowing is getting the wrong diagnosis. Doctor shopping for a specific diagnosis is a great way to get the wrong diagnosis.
  8. Not Diagnosed, However Need Advise

    If three neurologists have told you that you don't have PD, then you likely don't have it. I'm not sure that shopping for a doctor that will give you the diagnosis you want is smart. If you keep shopping, you will surely find one that will diagnose you with PD. Then, you will both have the wrong diagnosis and, even worse, not have the correct one. If your symptoms are not significant enough to diagnose PD, then after the doctors have excluded other serious illnesses, you would be smart to live your life to its fullest and forget about PD. If you still suspect that you have PD and won't let it go, then now is the time to start the best treatment for PD - EXERCISE! If you're not willing to exercise, then what's the point in pursuing a diagnosis?
  9. A little something to think about

    Yep! Just keep moving!
  10. Water quality

    The key to water filters is to look carefully at the specs. For example, fluoride is a very dangerous chemical that is added to many municipal water supplies. Many whole house water filters do nothing to get rid of fluoride. Instead of a whole house water filter, I filter all the water that we drink with a Big Berkey filter. It not only removes all the bacteria and other crud, it removes the fluoride. Just remember that there are many other toxic things we are putting in our bodies. For example, GMO food, BPA in plastic water bottles/containers, pesticides in/on food, etc. Bottled water generally won't help and in most instances is nothing more than water from a municipal water supply put in a plastic bottle.
  11. Frustrated

    According to the latest MDS diagnostic criteria, a negative DatScan is an absolute exclusion criteria for PD. So, you're MDS could easily be right that the medicine is causing your symptoms.
  12. Parkinson and treatment drugs

    In my opinion, the key is to keep moving. For example, I don't like the idea of walking 30 minutes a day, if the rest of the day is spent sitting on the couch. I don't like the idea of an hour of cardio, when a person has a Handicap sticker and parks as close to the store as possible. I think that battling PD requires a lifestyle change that means the patient will take every available opportunity to move throughout the day. When I go to the store, I park as far from the store as possible. I will usually walk a lap or two around the big box store before I begin shopping (each lap around Walmart is almost 1,000 steps. I own a business and have a massive number of bills to pay each month. When I pay bills, I pay one bill at a time and then take each receipt to the basement to be filed. I make a trip around the basement and do one exercise with each trip. I often have over 100 flights of steps a day. I'm not saying don't do organized exercise. Quite the contrary, I think participating in organized PD exercise is very valuable. What I'm saying is that in addition to whatever PD exercise program(s) you do, you also need to move all day long! Move it or lose it!
  13. I was diagnosed with PD 4 years ago. During that time, I have used exercise as my primary treatment for PD. I credit the exercise with my slow progression during that time. Unfortunately, a few months after I was diagnosed, I foolishly allowed my neurologist to talk me into taking Mirapex. I was lucky to survive this drug. The final straw came when I literally fell asleep at a stop sign while driving. I was fortunate that I didn't kill myself or someone else due to this dangerous drug! The exercise was effective in combating most of the symptoms of PD with one key exception: tremor. Over the past 4 years, my tremor has continued to get worse and is quite noticeable and irritating. Therefore, a little over a year ago, I decided to try medical marijuana, even though I had never used marijuana or any other illicit drug in my life. I found the medical marijuana to be very effective with my tremor and also many other aspects of PD, including urinary urgency/frequency; fatigue; sleep problems; and more. It seemed to be a miracle drug and best of all had no side effects. During this past year of using medical marijuana, I have discovered a couple of significant problems with taking this drug. For one thing, I discovered that medical marijuana is not hospital friendly. I have had a couple of kidney stones during the last year that landed me in the emergency room. Needless to say, PD is made greatly worse by pain and stress, and when you combine that with not being able to take your medicine (medical marijuana) while in the hospital, that can be a real problem. My tremor absolutely exploded while in the hospital. It was as if someone taking Sinemet suddenly stopped taking their medication amid severe pain and stress. Not good! I can only imagine how bad it would be if I was admitted to the hospital for surgery or some other serious condition for an extended period. Another problem with using medical marijuana is traveling. Some states still treat marijuana possession and use quite seriously. I have an upcoming road trip that will cross many states, and using medical marijuana on the trip could be risky. A final problem is the idiotic DUI laws in many states. Many states use a ridiculously low concentration of marijuana in the blood or urine as the standard for determining when a person is impaired. When you consider that this level would be exceeded even if a person hasn't consumed any marijuana for weeks, this could be a real problem. A few months ago, I was pulled over for something, although the cop couldn't really articulate what I had done. I got a warning and was told to "drive safely". When he was talking to me, he noticed my tremor and commented that I appeared nervous. I held up both arms and pointed out that I was only "nervous" on my left side and explained that I had PD. However, if he had done a field sobriety test, could I have passed? My balance is pretty good for a person with PD, but I'm not at all certain that I could pass even though I wasn't impaired in the slightest. So, the bottom line is that medical marijuana is a fantastic drug. Unfortunately, there are some real problems that have to be considered when using it as your primary PD drug. As a result, I have tried a couple of other things which I will detail in other posts.
  14. By chance, are you selling vibration machines?
  15. “A democracy (republic) cannot exist as a permanent form of government. It can only exist until the voters discover that they can vote themselves largesse from the public treasury. From that moment on, the majority always votes for the candidates promising the most benefits from the public treasury with the result that a democracy always collapses over loose fiscal policy, always followed by a dictatorship. The average age of the world's greatest civilizations has been 200 years. - Alexander Fraser Tytler
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