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DaveN

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Everything posted by DaveN

  1. What caused your Doc to suggest DBS?

    Not true. I recently had my spinal cord stimulator replaced, upgraded. The only reason my doctor did a general was because we switched manufactures and there was a chance that the leads would need to be replaced. Next it’ll be done under a local. Replacing the battery is a simple procedure. He usually does battery replacements with a local if they’re not replacing the leads. Dave
  2. What caused your Doc to suggest DBS?

    Stump, You need to pay closer attention to what Mireille said. Her battery (IPG) was replaced under local anesthesia. Dave
  3. URSODIOL - A Potential New Drug for PD

    Fred, Rytary is not the same as Sinemet CR. It is a different formulary. You’ve made that association before and felt it is necessary to correct you on that. Rytary was designed to avoid the ups and downs that occur with Sinemet IR and CR. Rytary is not for everyone as the dose is difficult to regulate because of its time release capabilities. Dave
  4. URSODIOL - A Potential New Drug for PD

    Good morning Fred. Did you test to see if your beloved Ursodiol is causing this undocumented side effect with Sinemet? It should be a pretty simple test to find out. Take your original Sinemet, wait till the neuropathy returns, then stop the Ursodiol. Neuropathy sucks and the last thing you would want is for it to become permanent. I can attest to the fact that it’s no picnic living with it on a daily basis. One final note, have you tried Rytary? Dave
  5. My wife and I completed a 10 day cruise to New England and Canada last month, approx. 3 weeks ago. I adapted fairly well to the gentle rocking of the ship. Since returning home, I've been experiencing extreme vertigo like symptoms. It feels like I'm still on the ship but in really rough waters which we did not experience at all while on the ship. Has any of your patients experienced symptoms like this following a cruise? Any help in resolving this problem will be greatly appreciated. Thanks. Dave Diagnosed with Parkinson's 6/2014 Medications: Azilect 1mg, Rytary36.25/145mg 2@6:00, 2@10:30, 2@15:00, 2@9:00, 1@bedtime
  6. PD Back Skin Pain?

    Sounds like neuropathy to me. Get an appointment with a spine specialist if you are really concerned. Dave
  7. Can I get your opinion

    Zach, You probably have low potassium which would cause the fasciculations. There are a lot of conditions that can cause a tremor. Parkinson's at your age is really really really rare. So in my humble opinion as someone with Parkinson's, I don't think its a possibility. Dave
  8. Can I get your opinion

    Zach, Parkinson's develops over a much longer period than 5 weeks. We're not doctors here but your symptoms are not consistent with Parkinson's. It sounds like you have some kind of issue going on and you should talk with your parents and make an appointment with your family physician. Dave
  9. Approved for DBS

    Kevin, if you’re not comfortable I would postpone the surgery. Dave
  10. Not Diagnosed, However Need Advise

    Doubleup, Congratulations on not being diagnosed with Parkinson's. I'm sure that must be a load off your mind. You still have some waiting to do to see if your symptoms will clear up on their own. Try not to focus on everything and remember to excercise. Dave
  11. Handwriting changes

    Super, You should get a second opinion. Just my two cents. Georgetown has a really good Movement Disorder Clinic. Dave
  12. Handwriting changes

    That is one of my first symptoms to appear when I start to go OFF. Dave
  13. Interesting cannabis study

    You can not get rid of Parkinson's disease. It is an incurable neurological degenerative disease of the brain. The only thing known to slow down the disease is exercise. Dave
  14. My wife and I just completed a 10 day cruise to New England and Canada. We had a wonderful time and I adapted fairly well to the gentle rocking of the ship. Since returning home, I've been experiencing extreme vertigo like symptoms. It feels like I'm still on the ship but in really rough waters which we did not experience at all while on the ship. Has anyone else experienced symptoms like this following a cruise? My wife believes it may be the Rytary since I've never experienced this after a cruise before (this was our third cruise). I'm hoping that this will resolve in a couple of days. Let me know if anyone else has experienced this phenomenon. Thanks. Dave
  15. Akathesia, is this present in your off?

    I have it in my OFF and ON. I consider it to be mild. When standing, I tend to sway back and forth. Thanks, I never had a name for it. How bad are your symptoms? Dave
  16. URSODIOL - A Potential New Drug for PD

    Rick, I am unaware of Amantadine little known fact. Can you point to some documentation or studies indicating that Amantadine will contribute to an increase of symptoms or accelerated progression? Thanks. Dave
  17. URSODIOL - A Potential New Drug for PD

    Patriot, I'm also curious as to what this drug actually is supposed to do. It looks like Rick's PD has progressed rather rapidly even though he's taking a lot of pills. Dave
  18. New guy here - a journey I'd like to avoid

    Congratulations!!!!! I wish you the best. Dave
  19. New guy here - a journey I'd like to avoid

    Superdecooper, You need to tell your doc everything, including the sense of smell issues. Let him determine what's important or not. Dr. Pagan at Georgetown is my doctor. He's a good man and I like everyone on his team. They're very thorough and take the time to figure out what's in your best interest. He's leading the research on a cancer drug that looks to turn back the clock on Parkinson's. Dave
  20. New guy here - a journey I'd like to avoid

    My wife was researching Parkinson's in regards to her mother because we suspected she might have it. Her mother's sister has PD which was the reason for the suspicion and some symptoms. Her mother's issues are anxiety related which she has been battling all of her life. During my wife's research, she began to suspect that I might have PD. My right arm didn't swing, I was moving like a snail when I got up in the morning, the tremor in my foot, and I had very little sense of smell. It took several months before I was seen by a Neurologist. By that time I had a light tremor in my thumb, index and four finger. He suspected Parkinsonism mostly because my tremor was a little fast. I did a host of tests and that's where the train went off the tracks. My immune system was statically in the toilet. They re-ran the blood work with the same results. I was sent to an Oncologist to determine what form of cancer I must have because something had to be destroying my immune system. After a lot of tests to include a bone marrow biopsy, I was declared healthy with the exception of a compromised immune system. It's still compromised to this date. My Oncologist said I should be sick all the time, so whatever I'm doing don't stop. I only odd thing that i do is eat 2-3 oranges a day. To make a long story short, my neurologist wouldn't commit to a diagnosis and his appointments were about 5 minutes each time. He was so busy that he didn't even remember me from the previous appointment. My wife's aunt suggested her doctor, so I switched to him. He diagnosed me after a 2 hour appointment with him and one of his fellows. We scheduled a DaT Scan to confirm which came back with some loss on the left side. I still had doubts, so he did a Sinemet challenge in his office. It was like night and day. After an hour, my lite tremor was gone, stiffness was gone, it was basically life altering. Dave Note: Agree with Stump, Loss of Sense of Smell was probably my first symptom.
  21. New guy here - a journey I'd like to avoid

    Superdcooper, Most of the time I have a very fine tremor in my index finger and thumb. My tremor actually started with my right foot. Drove my family nuts when watching TV. Of course we never thought anything of thinking it was just a habit I developed. I didn't seek a diagnosis until it was so difficult moving in the morning. My muscles are super tight, which probably also contributes to my back problems. Dave
  22. Diagnosed 6 months ago at the age of 52

    MD Dog Lover, Why are you so sad? Parkinson's is not the end of the world. Your not going to die from having it. It will make life interesting sometimes but it's certainly not something to fall apart from. It's not like you have terminal cancer. My suggestion is to start an excercise program, which is known to slow progression, and live your life. Dave
  23. Newest DBS system st Jude's

    You have to be within a couple of feet to establish a connection. I had my SCS upgraded this past summer to a Bluetooth model. The generators only work with apple products and to be more specific, an IPod. Kinda bugs me, because I would prefer to control it with my phone rather than still having to carry a second device. I'm sure the DBS folks have the same issue. Keep us posted on your progress YLopez56. Dave
  24. New guy here - a journey I'd like to avoid

    Yes, your doctor is running these tests to determine what is wrong or rule out diagnosis that can be confirmed through these tests. Parkinson's is a tough disease to diagnose and is usually done by process of elimination and clinical observation. If your diagnosed with PD, you want the doctor to be sure he's right. It's not the end of the world having PD. I've officially had PD for about 3 1/2 years now. My wife suspected it about 4 years ago when she was researching it in regards to her mother. The more she read, the more she determined that I needed to be seen by a doctor. Her mother does not have PD. To this date, only a handful of people know I have PD. I hope you don't have Parkinson's. Listen to Mrs. Supes, she's 100% correct, don't worry about it. Dave
  25. Trying Sinemet

    Patriot, That was the last problem that I recently solved. My last dose of Rytary is 9:00pm but I was waking up without fail between 1:30 and 2:00 to pee. I ended up adjusting my meds. I now take two Rytary at 9:00 and the final pill right before I go to bed which is usually around 11:00pm. Since that adjustment, I haven't had to get up in the middle of the night. Maybe your Doc can prescribe Sinemet CR for bed or even try some Rytary. Just some suggestions... Dave
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