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Everything posted by Superdecooper

  1. Hi Dr. Okun, i read somewhere that many men with PD have low testosterone. After a brain MRI, My endocrinologist told me several years ago - long before I took note of my current tremors and other related PD symptoms - that my pituitary gland had stopped signaling for production of testosterone. Now I'm wondering about the link between low T and PD. I found this in a recent posting at https://neuroendoimmune.wordpress.com/2013/11/13/dopamine-and-testosterone-two-important-pieces-of-the-neuroendocrine-puzzle/p "An up-regulation of dopamine stimulates the release of prolactin inhibitory factor (PIF). PIF inhibits the pituitary from releasing prolactin. Because prolactin inhibits gonadotropin-releasing hormone (GnRH) secretion, the inhibition of prolactin caused by dopamine, increases the secretion of GnRH, therefore increasing the secretion of testosterone." In light of the above information, I'm wondering if taking Azilect, which my MDS has prescribed, might lead to an increase in my production of testosterone? -S
  2. Superdecooper

    PD Guy - Shot Thru The Heart

    Wow, this thread is getting really deep and personal. Yikes! No McCall, I haven’t considered implants. But I would if my wife asked me to, or if my urologist thought it would help. I’m not sure how I would feel if later my wife had a health issue that made sex less appropriate. Probably upset, but life is like that with lots of twists and turns. Otolorin, I think sex counseling is a problem for people regardless of whether PD is involved. It’s just another of those hang ups that Americans face. Unfortunately we live in a puritanical society that uses sex to market products. Very confusing for most people. You can go to counseling yourself to get yourself straightened out, but at some point you might need your wife to come with you. Maybe your counseling will give you the courage and the words to say to make a difference with your wife. -S
  3. Hey Zer0, i hope you keep fighting for your health. It may not be PD, but you have a right to find out a definitive diagnosis and get the right treatment, plan, medications and piece of mind. Seems like what you have is not PD, but you’ve been hanging around this board because folks are willing to listen and help you figure things out. But I’d suggest you also look elsewhere for support...that more aligns with your health concerns. But don’t give up or give into despair.. heres some reading https://www.washingtonpost.com/national/health-science/doctors-dismissed-her-but-she-turned-out-to-be-right-after-years-of-needless-suffering/2018/09/14/b5364c64-9593-11e8-810c-5fa705927d54_story.html?utm_term=.5765f38b5750
  4. Superdecooper

    Transition to higher dose of CL

    Hi Dr. C, At my last MDS visit, my Rx was changed in hopes of lengthening the time between doses and addressing some new symptoms: Rx - Carbidopa-levodopa 48.75-195 mg per ER capsule (RYTARY) Replaces carbidopa-levodopa 36.25-145 mg per ER capsule (RYTARY). The doc said to finish out my current meds - i have about 4 weeks left - and then start the higher dosage. He didn't want me to waste the lower strength Rytary. My question is - I don't want to just jump from one to the other. I'm looking to make a smoother transition if possible. Go slowly if possible. I'd like to take the 36/145 for three times a day and then take the 48/195 one time a day for about a week. Then gradually substitute the higher dosage for pills 3 and 4 for about a week, then switch over totally to the higher dose for all four pills in about 2 weeks. Is that okay, or would you recommend something else? Maybe doubling up on the 36/145 for the 4th dose? Thanks for all your help and for all you do for this forum, Superdecooper
  5. Superdecooper

    Question about Link between dopamine and testosterone

    So another question will taking synthetic replacement dopamine (C/L) impact the production of testosterone? thanks
  6. Superdecooper

    Lymes Disease Mimics PD Symptoms

    Drummergirl, im sorry to hear all those symptoms. Do you still drum?
  7. Superdecooper

    Welcome to the club

    Hi Gang, I thought I'd post a short note on this forum. Following a positive Datscan two weeks ago, my MDS diagnosed a dopamine deficiency, with very early onset of PD symptoms. The MDS said my mild motor issues, including some with a psychogenic overlay, don't rise to the level of full blown Parkinson's disease. However, the non motor symptoms definitely raise the prospect of PD, so he's starting me on Azilect later this month in hopes of keeping me from developing into Parkinsons in the coming years. I'll get another Datscan next year, but he expects that will also come back positive for PD. I'm not sure how you can have a lack of dopamine causing a resting tremor, apathy, right side stiffness, insomnia, night sweats, vivid dreams and kicking, diminished sense of smell, painful dystonia and small handwriting, low testosterone, reduced arm swing and dropping things and not have PD. But, I'll go with the diagnosis for now as long as the Azilect begins to address all that in the next three months. Looks like we caught this early and might have a chance to head things off. So welcome, or something. If anyone has a similar story, I'd sure like to hear it. -S
  8. Hi gang, I'm new on this board and could use some guidiance and feedback. I'm in my mid-50s and haven't been diagnosed with PD, but i wanted to share my story. I went to the neurologist this week to find out what's going on with my right hand tremor. It started about 18 months ago, my wife noticed it about a year ago, and i paid attention about 6 months ago when I started dropping things and noticed my handwriting was starting to look scrunched up on some days. Normally, I have a flowing artistic signature, but some days I cant manage more than just a barely legible scrawl. I have on going spine and shoulder issues and thought that might be the cause. So, i took my MRIs - brain and spine - to the neurologist, plus a list of medicines and filled out a questionnaire that listed all the medical issues I'm dealing with. Trying to fine out if i just have wear and tear based arthritis, why so many bone spurs, and why the hand keeps jumping around - maybe its my worn rotator cuff muscles, maybe its my cervical fusion, maybe its scar tissue. The neurologist did a bunch of exams with reflexes, asked me to draw a spiral circle - way harder than i thought - asked me about my sexual health, when the tremors took place, recent blood tests, and discussed thyroid problems and possible Parkinson's disease. He sent me out to his nurse to scheudue a bunch more tests, including an EEG and some type of doppler test. I think he wanted me to come back and see him for a brief chat after the tests were scheduled - I didn't. I think I must have misheard him about a second chat. But i have to go back next Monday for the nerve EEG brain test and the Doppler test, which is some kind of tilt table transcranial test thingy. Like the physical therapist, He said the tremors are not related to my spine and shoulder issues. I'm determined not to freak out here. Mrs. Supes says don't worry. I'm glad your taking care of yourself. We'll get through this too. (She's a good wife. I love her.) but i am freaking out a little. I have to stop looking at Dr. Google because Ive notice that some of the symptoms that I've big ignoring (vivid dreaming and night movements while sleep, problems with sex, night sweats and sleep apnea) may also be common to Parkinson's in some way. I'll keep everyone posted after I get these tests done over the next two weeks. what do you think? Wishing everyone a pain free day. -S
  9. Superdecooper

    New guy here - a journey I'd like to avoid

    I've stopped posting in this thread, but wanted to make one last comment: It's been a year since (September 2017) when i visited a general neurologist because of a tremor and then logged into this forum looking for answers. In June 2018, I was formally diagnosed with Parkinson's Disease and this week (September 2018) is the first time I'm seeing it in my medical records. Ah well... I didn't avoid this journey after all. But, Life goes on...I will find a way or make one.
  10. Superdecooper

    Welcome to the club

    So, PD is now part of my permanent medical record... Clinical notes from my MDS appointment this week -- Diagnoses This Visit Parkinson disease - Primary ASSESSMENT: Mr. Superdecooper is a xx-year old man with the above-mentioned history and idiopathic parkinsonism confirmed with DaTscan who is currently doing reasonably well on current regimen of antiparkinson medication, but may benefit from slightly higher dose. Change detailed below will be made. PLAN: 1. Continue Rytary but change to 48.75-195 dosage (one tab 4 times daily). 2. Continue Azilect (rasagiline) 1 mg daily. 3. Continue daily regimen of physical activity and exercise. 4. Followup visit in 6 months.
  11. Superdecooper


    I just met a guy who was diagnosed in 2015. He has the symptoms and takes CL. Guess what, he just asked his MDS are you sure I have PD? Seems like it's not unusual to problems with acceptance. I said to him, 3 years later and you're still looking for verification. He said, yes but he knows he has PD.
  12. Superdecooper

    Who's on your healthcare team?

    So, I'm building a support system for myself of medical professionals I can rely on to help when things spiral out of control. Preferably those comfortable enough to talk with me by email or phone, without having to schedule an appointment that could be weeks away. But if not, who are at least willing to get me in for an appointment within days, not weeks. So far, I've got: Two physical therapists - who treat PD and have given personal emails to contact them; also supplied me with loads of specialized exercise information. A Neuropsychiatrist - who I see twice a month, or less, who will talk by email. A general practitioner doc - who will see me the same day that I call. A chiropractor - who will see me the same day. An MDS - who sees me every three months, but also will contact me by phone and email pretty quickly I'm looking for a nutritionist. Did I leave any medical professional out?
  13. Superdecooper

    Who's on your healthcare team?

    Thanks this was helpful.
  14. Superdecooper

    Who's on your healthcare team?

    Hi Gardner, To each his own. I hate going to the doctors almost as much as I hate taking pills. But I do it anyway for my loved ones. I've had several family members who avoided the "medical industrial complex" (no physical exams, no routine visits, no follow ups for testing, no mental health care).. ... leading to early graves, some as young as 46. LAD, seems like you got a family connection going on and Stump - seems like you must live in an area with not a lot of local medical care, plus the kids always come first. I get it. In addition to my list above, I also have a cardiologist, an ENT doc, and a couple of massage therapists. I'll probably add an acupuncture doc and maybe a personal trainer, soon. But I'm pretty physically active. I swim six miles a week and walk about 10 miles a week. I've been an amateur athlete for most of my life with a natural affinity for competitive sports like martial arts, weight lifting, etc. I'm just a few years shy of 60. Regardless of PD, I don't plan on going quietly into that goodnight. -S
  15. Superdecooper

    Welcome to the club

    Here’s an odd thing. When I am happy, like watching a really great suspenseful movie, or seeing old friends, or laughing, then my left leg starts tapping full force. If I happened to be sitting down at the time Its like my foot decides to let me know- we are really having a good time right now, buddy. So odd, but kinda funny. Most of my symptoms are all on my right side except for a tremor in my left index finger. -S
  16. Superdecooper

    Weaning off arthritis meds

    Hi Mark, I'm thinking about cutting back on the amount of medicine I take for arthritis/bulging spinal discs. Before the whole PD circus began, I was taking percocet 7.5/325 4x daily. But the neurologist had me stop that when I started taking (1mg Azilect 1x daily) in December. Instead of taking percocet, the pain management doc substituted (300 mg of gabapentin 1x daily) at bedtime. I also started seeing a chiropractor (spinal manipulations and cold laser therapy) and swimming. I've stopped the chiropractic visits for the time being. In December, I also continued taking (10mg of baclofen 3x daily), and (150mg of Arthrotec 3x daily). In June, after I was formally diagnosed with PD and put on( Rytary 36/145 4x daily at 6, 11, 4 and 10), most of the spinal pain and stiffness evaporated. That's freakin awesome!!!! So, I have cut down to (20mg of baclofen - 5mg at 6am and 10 am and 10 mg at bedtime) and (150mg of Arthrotec 2x daily). I'm still taking gabepentin. Questions: I don't think i am going to be able to get off baclofen during the day because it is still having a good impact on dystonia in my dominant hand and right foot. But maybe I could stop the dose I take at bedtime. If I wanted to try to decrease the arthrotec or the gabepentin, how would I do that? I'd like to avoid going cold turkey and having withdrawal side-effects. I understand it might be wise to leave well enough alone, but I feel a need to give my body a rest from some of the meds for a while, if possible. Thanks for any suggestions you can offer. -S
  17. Superdecooper

    This & that!

    When a Bear Comes to Visit by superdecooper (c) 2018 They scratch, they bite. They're not polite. Visit without calling, coming unannounced into the middle of everything else. Won't sit still, gnawing on leftover meals. They're real. The place they like the best is sitting on my chest. Heavy, like a load of iron dead weight. I gather my strength to fight; but those claws that catch, those jaws that bite. On my chest, maybe the thing to do is just breathe. When bears come to visit, they will move on. Nothing to see here. Just breathe.
  18. Superdecooper

    PD is not the end

    HI Linda, Thanks for the post. "The people who are the most comforting and the most encouraging are those who have endured hardships and have been made smooth because of those challenges." The gist seems to be that life's troubles, such as Parkinson's, will make you graceful and smooth like a stone, worn by time and ocean currents. I've heard that before. I'll let you know how it works out after I get out of this riptide and come up for air. -S
  19. Superdecooper

    PD is not the end

    Can someone please stop the merry go round. I’m ready to get off.
  20. Superdecooper

    Welcome to the club

    Bother... It would be amazing if I totally adapted to PD in less than two months. And no one would believe me anyway. So, I'm going crazy here, quite simply. I'm no where near getting used to this. How long is this transition period supposed to last..ugh. Waiting to get diagnosed sucks. Getting diagnosed sucks. and living with PD also sucks. I must be having a bad day, or something...
  21. Superdecooper

    33m. Worried of YOPD

    Hey zero, i hope you don’t have Parkinson’s disease, but you won’t know for certain unless a doctor makes a diagnosis. When is your next appointment and is is with a motion disorder specialist? The MDS could say it’s too early to say for certain, let’s wait a while, come back and see me in 6 months or a year. What will you do then, will you have six months more of frustration? Judging from your videos and the information you’ve posted, it sounds like you should keep an open mind when you see the doctors. There are other medical conditions out there that could have some of the same symptoms that you list, so it’s really too soon to chose PD from a list of chronic illnesses. The folks on this board want the best for you. So do your part by getting some answers from a doctor, rather than seeking validation here. I don’t think anyone can offer that to you at this time, until you get some better test results. Then at most, you’ll get suggestions on what steps you might consider. Please don’t translate what I’ve said into: “We jealously guard membership to this fantastic club. It’s so exclusive that we only accept new members during a secret ritual once a year. Sorry, you missed your window.” I’m not saying that at all. Like others, I’m advising you to be patient for a while longer. There’s always time for worrying later. I know exactly what I’m telling you to do is very difficult, especially when you know something is wrong and your body is not behaving the way it has for years. You want answers now and meds to make it go back to normal. What you actually need is patience and some good medical care. -S
  22. Superdecooper

    Welcome to the club

    Ouch. Dystonia is no joke. Are you taking baclofen muscle relaxer. For some people that helps some. Yes im doing okay. Just dealing with side effects of taking C/L. Now that I’m taking it, the pain in my dominant hand, right foot and right shoulder have lightened up. Thank goodness. At least until the Meds wear off. -S
  23. Superdecooper

    Rytary and Nausea

    Side effects to increasing the amount of carbidopa?
  24. Superdecooper

    Rytary and Nausea

    Hi Mark, is this still the best advice for combating nausea after taking Rytary. My doc recently upped my dose from 1 pill 3x daily to 1 pill 4x daily. The last one at bedtime. But I’ve noticed a tendency to have coughing fits and a desire to throw up throughout the day. Not constantly, but generally about an hour and 3 hours after taking meds. At first I thought the coughing was related to a cold and allergies, but Flonase and Claritin D have no impact. I’ve tried eating before Rytary and eating with Rytary. I’m taking 36/145. I really don’t want to change meds, because I really, really am grateful for the impact Rytary is having on knocking down my PD symptoms, especially the way it just about stops my tremor and dystonia. And I don’t want to go back to having trouble using my laptop, writing things, dropping things, pain and stiffness, and trouble getting up from a chair or freezing as I’m walking through doorways. What do you think about this? Also, How much more carbidopa would I have to take, and are there side effects to taking more? -S
  25. Superdecooper

    Welcome to the club

    The Rytary/Azilect is working out pretty good. I got my doc to boost my dosage of Rytary from 3x daily to 4x, so that I could take it about an hour before bedtime. I also received the mouth guard from my dentist to keep my teeth from chattering and grinding throughout the night. I seem to be resting better and wake up with a little more energy. That's the good news. The bad news is that my big left toe is getting that certain funny feeling...just started about two weeks ago, and it's mostly inconsistent since the meds have put a stop to most all unwanted movement. It happens mostly in the mornings, but sometimes midday between doses or late in the evening. The feeling in my left toe is the same as the one that started in April in my big right toe - which then then turned into nonstop, full-on flexing and curling under at random times of the day. Yes, most of my symptoms are on the right side, except for my left index finger which has had a tremor since December 2017. I haven't told my MDS yet, because I don't want anymore meds. I'm still trying to get used to the side effects. I'll tell him at my September visit if it doesn't go away. -S