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nosoupforyou last won the day on August 20

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  1. nosoupforyou

    Neg DatScan and DRD

    I had previously posted about seeking a second opinion on a negative DatScan result at my local university teaching hospital here in Arkansas. As a short recap, I'm 33, male, and have dealt with a very slow, gradual increase of neuro symptoms over the past 2 years. -Started with shoulder/upper back stiffness (hypertonia like after working out), then neck stiffness. Night sweats, multiple sleep disturbances. Urinary urgency. Then stiff down the right arm, slight twitching of right thumb, curling of right toes. Then curling of right hand. Right arm goes from little bit of swing to doing nothing to moving in front of body. Muscles/back stiff now, right side of face slightly stiff, drool pools in front of mouth, dystonia bad in right wrist/hand and right foot now. Some mild speech issues (some slurring/running words together/repeat of beginnings of words). Postural tremor in both hands, resting tremor in right thumb now. Chest muscles stiff. Constipation beginning. Having convergence issues with vision/double ghostly images from lights, especially when driving at night. -Had negative DatScan. Doctor didn't know what to do. Had positive response to Requip but too many side effects. Went for second opinion at Movement Disorder Specialist. Said most likely Dopa Responsive Dystonia. Second opinion doctor did 20 second physical exam, very dismissive. Dismissed low ceruloplasmin/low copper as unimportant. Prescribed levadopa/carb. 25/100. Took about 1 hour to work, stayed in system about 4 hours before wearing off. 95% of symptoms gone after pill, but stomach side effects were too much to handle at the time. Gradually weened off and now not on anything. -Ceruloplasmin 11 at last count, Copper below normal (both urine and serum), CK levels below normal, Vitamin D levels below normal. Gastrointestinal exams came back normal. Negative for Wilson's Disease and any "look-alike" diseases. Two MRI's, both negative. Family history of Parkinson's, but all on one side that I know of. I fully accept the DRD diagnosis if that's what it is, but is there any possible way I could get another set of eyes on my DatScan? Could I PM the image itself to you?. I was only allowed to see it once with one doctor, and with a fleeting glance. I guess I would just like to know if DRD is more likely than Parkinson's at this point, or if I need to start thinking about another MDS. I don't want to look like someone who doctor-hops or is a disability seeker either, because that is not me in any shape or form. If anything, I want the doctor visits to STOP.
  2. nosoupforyou

    Lost waiting for a diagnosis

    Antipsychotics can be a cause of Parkinsonism, rather than YOPD. Has your doctor(s) explored this possibility? Especially without rigidity. https://www.ncbi.nlm.nih.gov/pubmed/10221855 Just a shot in the dark but that might have something to do with your symptoms?
  3. nosoupforyou

    New to Sinemet

    I've figured out that this was from cutting the CR pill in half. I took a whole and this didn't happen, but taking a half actually released the medicine mostly at once. So it was too much at once and the ole noggin couldn't handle it.
  4. nosoupforyou

    New to Sinemet

    Hey all. I just started C-L 25/100, 1/2 of a tab twice per day. Long story short, I'm 33, had a negative DatScan after my MDS saw parkinsonian symptoms, called it Dopa-Responsive Dystonia and put me on C-L. Even though I have some symptoms that have nothing to do with DRD, I have started taking the pills regardless. As long as I get relief, I don't care if he calls it Funky Britches Disease. Before the DatScan, other neurologists put me on Mirapex, which almost gave me a heart attack, and Requip, which made me gain about 7 lbs of fluid weight and develop OCD-like behavior. So after my second night of dosing (have started on just one half per night to adjust, given that I am really sensitive to medication), I just wanted to see if others had similar experiences. After that half of a pill, my balance is way better, stiffness way better, posture way better, no "puffing up" of shoulders and chest like I had just worked out, gait is much better, muscle spasms better, tremor is non-existent, and dexterity is much better (able to sort through papers, hold things without dropping them, etc). Just pooling a little drool and the right arm is still not swinging as much. It takes about an hour to kick in and wears off after about 4 to 5 hours. On the flip side of that, the first night, I really didn't feel many side effects. I was a little wired, like after having too much caffeine, but nothing too noticeable. Last night, and granted I have never done drugs in my life, but it was probably as close to "high" as I have ever felt and it made me uneasy. Everything really felt in sharp focus, but I also felt really antsy and really scatterbrained, like a thousand thoughts were running through my head like a highway. I was pretty decently shaky as well, with a sort of jumpy feeling in my chest. I had trouble getting to sleep last night and had a couple of "fainty" feelings. Did anyone else do this when they first started taking it? I'm also on Metaprolol 25 mg twice a day to control blood pressure, but I took it after the C-L should have worn off. I really don't want to get off this pill if I don't have to, as it has given me a glimpse of the old Adam for the first time in 2 years of slow, steady symptoms; I just don't want to be "Adam on Coke" either. Thanks for any insight!
  5. nosoupforyou

    Just Deny Everything

    I worked for the "world's largest retailer" last year in their HQ, and my advice is, if you work for a large employer, to just keep it to yourself until someone figures it out for themselves, and even then deny until you have to do otherwise. Eventually this will get to the point where you will have to tell them, but until then, do your thing. My experience was once they figured out something was wrong (33 year old in shape male + barely able to get out of chair stiffness was fishy to them), they did everything they could to get me to quit without firing me. Eventually I said screw it and found another job in a small town (and I am much happier because of it). Sinemet is my great equalizer.
  6. nosoupforyou

    Got my 23andme results

    I get way stiffer and have much more pain when I'm sick. Kinda like having the stiffness from the flu only with a regular cold. And I'm not sure about those genetic tests--the real deal they wanted me to do was $14,000 (they didn't take my insurance) so I refused to do it. I'm not much about trusting anything that cheap, especially since it only looks at a couple of genes. I've had four people on two sides of the family with Parkinson's, kind of a useless test at this point. I guess it depends on the type of symptoms you have? They put me on Mirapex immediately because I'm very obvious while "off". Really bad posture, no arm swing, dysarthria, etc. I'm 32 and didn't need my employer knowing something is wrong, so they definitely put me on the meds even while in diagnosis limbo. I was switched to Requip bc of the side effects of Mirapex. Usually they will put you on the lowest dose of either Requip or Mirapex and work their way up, so I'm kinda surprised to see them not do it. I personally wouldn't be able to last very long without them.
  7. nosoupforyou

    Good morning!!

    I just have to use Systane gel drops and rewetting drops. I have the same issue--the meds can do it, mine comes more from just not blinking as much. Especially since I wear contacts.
  8. I'm seeing a Parkinson's specialist at our state teaching hospital (UAMS, Dr. Dhall) so I'm sure this is something we'll discuss, but an interesting thing I've noticed when trying to read books the past few months is I have trouble focusing on close-by things. So I can read, but it's almost like one eye doesn't want to move--I have to close one eye to improve my vision. I had to do the same thing during my last contact exam but my optometrist ignored it.Otherwise, things can blur and turn into sort of an overlapping double vision. Kinda like a halo or a shadow drop font? My eyes are also majorly dry from the lack of blinking, but my vision improves if I keep blinking. Is that similar to what you talked about in the OP?
  9. nosoupforyou

    dyskinesia free l-dopa

    Yep, this one is a pretty clear spammer. Got any essential oils that will completely cure me while you're at it?
  10. Quit spamming. Not when you can't even spell Michael J. Fox right. No-one click that, please.
  11. nosoupforyou

    Freezing when using computer mouse.

    I too don't have a freezing problem, mine is usually my tremor and dystonia. Typing-wise I tend to hit the wrong keys because of the tremor, but with the mouse, dystonia takes over and cramps me up after a certain amount of use. I always take my doses of Requip around the times I know I'll be doing the most typing/mouse-clicking. They gave me tizanidine (sp?) for my muscle spasms, but it never did anything other than make me sleepy. Requip is the only thing that has helped with it. Siri is definitely good for tasks (set alarm, search something, call home), but if I use it for texting she misunderstands my speech a lot. Might have something to do with the Mississippi accent, haha
  12. nosoupforyou

    Any experience using head controlled mouses

    That's actually really neat. Although with how stiff I get in my neck and shoulders I'm not sure that wouldn't be worse. But I bet some people with issues with freezing and the bad hand tremors could really use it.
  13. nosoupforyou

    The Mask

    It's hard for me to make a fish face but I can arch one eyebrow on my "good side", haha, if nothing else I can look inquisitive
  14. nosoupforyou

    27 Male Frightened of YOPD.

    Number one, there have been people diagnosed with Parkinson's earlier than 27, so no, it isn't a "record". I agree that the person probably doesn't have Parkinson's, but that attitude is exactly the reason why some people (a lot of us in this forum 29-35) get the neurologist run around before we get a diagnosis.
  15. nosoupforyou

    27 Male Frightened of YOPD.

    Nole, When I first started having very early symptoms, they strictly looked for MS, didn't find it, and told me it "may be just the way my body reacts to things". After a 2 year carousel of worsening symptoms, here we are. That's my precautionary tale about listening to one opinion--always get a second one. Even if it's something small, it never hurts to ask. My symptoms began with stiffness in my shoulder and hip, then posture drooping, then a twitching finger, then dystonia in right foot/toes/hand, then progressive stiffness in right leg, right arm, face and so on and so on. Arm swing on right side slowly goes down (now just sits there, so I have to put my hand in my pocket). Then my upper body muscles started to puff up like I had been working out for hours. In terms of sleep, I began having night sweats and waking up 4-5 times per night. This all started when I was 29 going on 30. This didn't just happen suddenly though, it took months and months and months of continued progression from my first sign of shoulder pain. To be where I am now, it's been nearly 2 1/2 years of slow creeping up of symptoms, and even now I'm definitely functional (although obvious if not medicated) and do very well on Requip. This coupled with the fact that my grandmother, great uncle and great grandfather from the same side of the family had PD, I was put on an agonist last year. With that being said, and granted I am not a doctor (but I did stay at a Holiday Inn Express last night), it almost sounds like focal hand dystonia or carpel tunnel (there is such a thing as dystonic tremor as well). Shifting from side to side is also not a usual thing with PD--symptoms usually start on one side. Mine all started on my right. In terms of your sleeping issues, not sure. It could be stress (as much as I despise saying that because I know how that feels to hear) but it could be something else. Bowel habits wise, over the course of the last two years I've begun to slow down or have incomplete movements, which is notable for me because I have IBS-D. Anxiety can cause diarrhea as well, it has before with me many a time. This coupled with the panic attacks you describe definitely may have something to do with anxiety. At this point, if you've had that quick neuro exam, go to a GP and talk to him/her about your symptoms. I do think you have a legit concern about your health, but I wouldn't worry about PD if I were you at the moment. But still it is best to be proactive about your health and you took a great first step by asking us and going to a doc. It will definitely help for you to seek a second opinion.