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Waywrd1 last won the day on September 17 2016

Waywrd1 had the most liked content!

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About Waywrd1

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    Occasionally symptomatic at 38, Preliminary DX at 40.5, Official DX at 41.1

    No meds until Official DX.
    Current Meds: 2 25/100 4XD (6,10,2,6) and 1 50/200 CR at 10.

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302 profile views
  1. Anesthesia and C/L

    Mark, When you go for procedures where some level of anesthesia will be administered, are the anesthetic dosages reduced to reflect the influence of a PWP C/L load? I would think that you'd get less- they tell you not to drink on it for heavens sake, let alone Benzo's.... I take 1600mg of C/L a day: 2- 10/100 6xd 1/2 of 50/200 Cr at 6am 1/2 of 50/200 Cr at 3pm 1- 50-200 CR at bed. Thanks, Waywrd1
  2. I will give it a try, thanks!
  3. Benserazide HLC/Levodopa

    I'd love to hear how it goes. The Carbidopa isn't going well for me.
  4. Hey, so the Beta Blockers ended up making me feel poopy by day 4. Bummer. It was nice while it lasted. And, for me, remeron is useless for sleep.... Gave some some sub-Q fat, so that helps a little but that's just a bandaid. On the Sleep front I need a hypnotic as strong as ambien, but without the active/violent dreams and horrible withdrawal. Any ideas? Gastro appt next next week to start looking into my issues- upper and lower GI. Not worried about them at all, done both before. I also got a referral to the kidney area for my chronic low potassium. Luckily got assigned to the head of the clinic for Electrolyte and Hypertension Disorders down at the big M. Hope they find something..... And, I saw this and thought of you. https://news.mayomedicallaboratories.com/2017/07/20/large-scale-study-outcomes-long-qt-syndrome-patients-treated-specialty-center-better/?linkId=39950877
  5. How to Combat Nausea from Carbidopa/Levodopa

    Avoiding dairy with large amounts of why will also help. The whey molecule is huge, and throws dopamine off the pathways they share. And, milk or other fats can inhibit absorption.
  6. When should I start drugs?

    Your doctor's job is to educate you on your choices. They should be able to lay out your options and the pros and cons of each, so that you can decide. It's very personal as to what each of us would do, when faced with our unique situations.
  7. Mark- I must thank you for encouraging me! Your support is one of the things that's kept me going through the last 18 months, and to keep forcing the big M here in Minnesota do their d*amned job! I had an interesting experience today. My internist is an MD but he's got his boards in integrative medicine, so he's a thinker. He gave me beta-blockers- he said the anxiety might also be reduced simply because it would slow my HR. He wants to see if they make me feel better. So, I started them today and felt 95% normal for 6+ hours!! The C/L is definitely seriously screwing with my metabolism/heart rate. Interestingly, the extreme muscle fatigue was also 80% reduced. I'm going to continue to take 1/2 pill for a week so see if I still get the same effect. Obviously, I need to follow up with Endocrinology (who refused to give me the beta blockers a YEAR ago (because it was unlikely that the meds could cause this extreme of a reaction. Let me tell you, I now have a major issue with those people....) and will continue the diagnostic with Gastro for unintended weight loss/rt side heart. Do you think I need to continue with kidney? Waywrd1
  8. oh, and I still have not energy in the muscles themselves. My legs are always like after a hard run- quivering.
  9. The C/L saga continues.... and I'm still overachieving with side effects. Weight is still off 20-25lbs. As of September 2016, I was in full menopause at the age of 41 and 65% of my hair had fallen out- that's how hard it is on my body. By March on the lower dose, my hair started regrowing and my hormones are totally back to normal. At Christmas I stopped the 25/100 and taking 10/100's, and immediately 70% of the side effects are greatly reduced. Still have extreme fatigue though. Cannot tolerate Comtan with the 10/100 to get more C/L through. Caused yet another ER attack on new years eve no less. Holter in March confirmed my bradycardia but I also now have tachycardia! HR is still up to 70-100 all day every day, when it never used to go over 70. I've got my EEG's pre and post PD if you want to take a peek. Echo had originally indicated right ventricle. Cardiac MRI confirmed an enlarged right atrium, but no QT wave. Specialist at the best heart hospital in the state (who only deals with right side heart issues) said they are always, always because of a functional issue/obstruction/drug intolerance affecting the lungs, liver, heart, kidneys or endo system. He also didn't like my off kilter electrolytes, chronically low/ultra low potassium, high /very high chloride and amino acids which are also imbalanced. Saw Mayo drug allergists last week. They said it's acting more like a hyper sensitivity/toxicity than an allergy. Tomorrow I go back to Mayo to see Gastro for weight loss/liver review (which has all been "normal" with local specialists.).... if not them, then I'm onto the Endo, Kidney people.
  10. The Great Mimics or Parkinsonian Conditions

    I"m looking for the mimics outside the usual MDS list.
  11. Dr. Okun, Can you give me a list of other conditions which respond to C/L but are considered the "mimics" where it looks like PD, acts like PD, but isn't. I'm thinking of the conditions like PKU, Glycinura, Lycinuria which may have adult onset, so they aren't going to be on a genetic panel. Thanks!
  12. Quick update- still looking into this. Weight loss continues, 20-25 lbs. Right Atrium is still enlarged. Not allergic to Carbidopa, onto Mayo Gastro (Unintended Weight Loss practice) to see if it's a liver/enzyme/neurotransmitter metabolites problem.
  13. DaTScan and Depression

    Dr. Okun- If you had a low dopamine condition like Depression or PKU, would the Dat look like the typica PD scan (period and a comma) or would it be "normal" (two commas)? Thank You, Waywrd1
  14. Stalevo

    Mark- I'm doing pharmacogentic testing to make sure I've not got any issues metabolizing COMT inhibitors. Stalevo looks like it's coated- similar to Advil (which has never been a problem). Are Staleveo white inside? This may be a viable alternative to the dye free customs. Got levodopa, carbidopa, something to give me a bump and no dye. Waywrd1
  15. Allergic reactions to yellow dyes in Sinemet

    All of the 50/200's were moved to purple and the 10/100 class has all been moved to blue. "Reduce confusion" about which one you were taking. Unfortunately, the 10/100 isn't getting enough levodopa through, I'm down to a 2.5 duration for a 2 pill dose so that's 6 doses a day, plus a CR at bedtime. This level of med isn't sustainable- I'm years from diagnosis as Young Onset. I'm going to custom compounding of meds to get it completely dye free. About 75 cents a capsule. Mark- The custom med is loose in a capsule, versus a pill. How much faster will the absorption be as a powder versus the pill? The docs suspect that part of my epic Rytary failure was that the capsule dissolved to quickly, dumping all of it into my system at once. I'd prefer not to repeat that experience....