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Waywrd1

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Waywrd1 last won the day on September 17 2016

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About Waywrd1

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    Advanced Member

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  • Gender
    Female
  • Location
    Minnesota
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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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  1. 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
  2. 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....
  3. Thankfully, my insurance does cover the testing as well as pharmacogentic testing. Even if I can't get them to look at the urea directly, the pharmacogenic testing will also point them in that direction if it comes up as abnormal as my prelim results were. I'm wildly positive for two out of the three diagnostic criteria for lysinuria and glycinuria. I just don't have any ammonia results on file, I don't doubt I will eventually- at the side effect attacks I've had which landed me in the ER, all had moderate to significant cognitive/communication impairment. No one ever thought to pull aminos and ammonia test while I've been under medical care. Why would they, it's even more rare than YOPD but the side effects of a urea disorder read like a diary of my side effects complaints.
  4. The DaT only report the physical structure of your uptake neurons- not their efficiency or quantity. My MDS said that even if your DaT is positive at diagnosis, so they know it's an uptake issue, they don't really look to verify if it's also a production based issue, because the treatment is the same- C/L. I have a normal tyrosine production number, a positive DaT and off the charts side effects to C/L but with perfect control and episodic attacks which render me insensible. My internists is looking into a possible adult onset cases of inborn metabolic disorders that can mimic all, some or most of the "Parkinsonian" umbrella. If you don't convert tyrosine, into l-dopa and then into dopamine it would look and act just like a positive DaTScan. And, if this is the case, the treatment isn't a whole lot different. Even if if they can prove a metabolic disorder, you could still have true PD. MSA is normally identified through the usual battery of autonomic tests- tilt table, valsalva breathing, QSART sudomotor, sweat test. The MSA patterns are distinct from PD, Pure Autonomic Failure, Essential Tremor, etc.
  5. Mark- Noticed something unusual at my last haircut. I've been taking the blue 10/100's since Christmas, as a dye allergy test. Weirdly, I tolerate the 10/100 better than I ever did the 25/100. And, my hair has started to regrow. This made everyone suspicious of the Urea Cycle possibility but also that I'm allergic/can't process the carbidopa. Does anyone still sell plain levodopa anymore, in the US or even Internationally? Waywrd1
  6. Mark- News from the Cardiology front. No QT that was ever mentioned on any of my reports. Holter monitor showed bradycardia and tachycardia. Echo showed an enlarged right ventricle, but the cardiac MRI ruled that out but revealed an enlarged right atrium. This is new since last August, of unknown origin but most likely hypertension induced. Autonomic testing at Mayo showed completely normal autonomic function. All known genetic causes of PD were ruled out. Going to do the pharmacogenetic testing for all known drugs (so many of them are used in PD I figured why not.) Amino acid testing showed that my weight issue might actually be a urea cycle disorder involving the dopamine cycle as well as how I use meds in my liver and kidneys. It probably would have never come out if I hadn't been YOPD. Still investigating that angle and will let you know. Justine
  7. I personally can only take Mylan. My on/off is much smoother, side effects reduced. Couldn't tell you why, but the Activas Elizabeth damn near killed me. I think my stomach acid dissolves it too easily and was slamming it into my system.
  8. I know we PWP move slow, but why does the site also have to move at a glacial pace?!?
  9. Mark- Lots of interesting news here, I'm onto the genetics folks for a whole lot of weird testing for a possible urea cycle disorder, lysinuria, and/or glycinuria. Hard to get the meds to work if you don't have the aminos (or too much of them) to process with. Waywrd1
  10. Mark- Oddly enough, I can't take but Mayne, causes the same problems that Activas does. Mylan is still good, but have to take 10/100.
  11. Yes, you get temporarily worse as your body processes the excess neurotransmitters created by the exercise, but are overall better for it.
  12. Sean, Sorry to welcome you to the class of 2017. I'm 2016. Realistically as young onset, you know about as much as most of medical science does about you. There are 1800-2400 YO cases in the US every year. We are all snowflakes, no two alike. No progression is exactly like anyone else's. Just generalized trends. Find a MDS you can communicate with, and that takes your concerns seriously! Mine is a royal pain in the ass. I"m about to fire him because he told me my side effects (which are horrendous) are all in my head. Well, they are but not in the way he'd like to believe. The "hysterical woman" diagnosis that most YOPD women get even after the PD is common. Side effects are very real!!! Do not let anyone dismiss your opinion about your treatment. Until the MDS sticks their head into the DBS frame and has it cranked on for real, their opinion is in third place behind mine and my husbands. It's shockingly easy for glib advice to roll off the tongue without real empathy for the consequences, even with an MDS! (In my case, you don't loose 25 pounds of fat and muscle off of a 145 pound body because it's "all in your head". And, I've been cleared by the head of the neuropsychiatric section as not crazy, or manifesting this loss through starvation.) I'd get the genetic testing done to see if it's a known variant or true idiopathic. 23 and me does free genome mapping of PD patients, but you'll need a genetic counselor to read it. Exercise!! Get nutritional testing done to see if your deficient in anything- most PD are vitamin D deficient, which impacts a whole ton of metabolic processes. I work in Financial Services: Welcome to Retirement Planning 600 and Estate Planning 400. (You skipped undergraduate work by virtue of a chronic illness, LOL. Time to get your MBA.) FIND A QUALIFIED FINANCIAL ADVISOR and an ESTATE PLANNING ATTORNEY who works with chronic illness. Find a qualified employment attorney and learn what is and isn't legal in your state, and decide how much you share to ANYONE connected to you staying employed. This unique for all of us. PD is not universally covered under ADA- what you share can and will be held against you by most employers especially as young onset. The likelihood of dementia is ultra low for us but is common in older onset. Someone looks up the wrong kind of PD, see's dementia, makes a wild assumption and watch discrimination happen. For me, it will kick me out of the industry so I keep my trap shut. Welcome to Budgeting 201- be thoughtful about your spending and saving habits, and how that ties into the future if you can't work. Life Insurance is still easily obtainable, but the price just went up. Do not delay in getting the biggest policy you can realistically afford. Term Life Insurance is fine, but only if you can convert to a permanent policy in the future without evidence of insurability. It can be a god send down the road for planning options. Get a HUGE Life policy on your wife, bigger than you think you need. You are now no longer insurable for individually underwritten long term care policies. The only way you can now get it is if your employer offers a group plan, and has automatic enrollment into the plan. Seriously consider working for companies that offer it as a group benefit- the US Government, Deloitte, Accenture, RGP, Grant Thornton. There are others, seek them out. Continue to live life, have goals and dreams!!! Waywrd1
  13. I old talk to the group that sponsors this site, and for All heifers and see a combo specialist. The daily quality of life is much higher if your doc is up to date on the Med's and the interactions. Your wife will certainly help because she's a PCP, and you wouldn't go to a heart surgeon for a dermatology issue would you?
  14. The only thing even remotely western medicine "proven" to delay the disease, and or is neuroprotective is exercise. Take the Med's on a consistent schedule, and try to maintain a window of a half hour before you eat or an hour after from a dose. The hour after can easily be shortened once you figure out of food hinders your absorption. If you find yourself in a bit of a panic, orange juice and caffine tend to force the c/l into your system a bit quicker.
  15. Patriot uses exercise heavily, and it works for him. I'm inclined toward that myself but am fighting orthopedic injuries.