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nixd02

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nixd02 last won the day on July 7 2016

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About nixd02

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  • Birthday 09/19/1970

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  1. My life unfortunately the past 3-4 years has been one big paragraph.
  2. I also posted this in the newly diagnosed but since I'm considered young onset I thought I'd post here as well. Hi. My name is Delise. I'm new to the forum, so before I actually ask my question I'll give you a bit (a lot) of background on me. I was diagnosed several months ago. After years of on going problems ; fatigue, severe cognitive issues, short term memory loss, left hand resting tremor, the feeling of concrete in my legs (many other issues but since my brain can't remember everything I'd have to look at our notes). Literally going from someone who was in top physical strength running 5+ miles, exercising and a Director of Marketing for a medical device company to barely able to walk without a cane. When all blood work, labs, MRI's all come back fine I started getting labeled with everything under the sun, stress, anxiety, somatization (psychological distress in physical symptoms), CFS, fibromyalgia, ME, depression, on and on. And going from Dr. to Dr. to get some sort of diagnosis. My family history with PD runs deep. My mother first was diagnosed with PD then with MSA (she only lived about 4 years after her diagnosis of MSA), both her parents had PD (died from other causes) and my maternal great grandmother also had PD (again, she died of other causes). My GP was no help, so when he got fired for peddling pain killers a new Dr. came on. A DO (Dr. of Osteopath) this was last year and for the first time I had a Dr. who listened and examined me. He said "I think it's MS or PD, so since you haven't had a spinal tap, lets get that and see." At this point in my life, I honesty didn't care what I had. I knew my body was sick, but with what? The spinal tap came back negative and honestly, I felt sad, defeated again (I know that sounds insane and stupid but I'd never been this "sick" hell, I never ever felt tired much less fatigued). When I returned to his office he said "let's try something, the meds for PD. If they work, we pretty much have our answer." I took them (first month I was so nauseated), but take the nausea away, the issues were going away. After the first month the nausea went away and I was walking almost normal, tremor no more, fatigue better, speaking (I paused a lot, said um, wrong words for things and I use to speak fluent with ease in front of hundreds of people), I was 75-80% back to normal. Went to 3 month follow up with DO and he and his nurse were astonished at my improvement and couldn't believe it as they had never seen me "well" he said it's PD no doubt. Let's get you to movement disorder Dr for diagnosis. Well, I waited 5 months to see her and in the mean time I was feeling great. Came time for appt. nurse called and said "be off your meds 24/48 hrs so she can test you first off and give you your meds and retest you." This is the same hospital that I'd seen neurologist, rheumatologist, infectiousness disease Dr's on and on. She came in sat at the computer and for the first 10 mins read the notes on me from other DR's (as I could barely sleep the last two nights crying with pain, legs stiff and like restless, tremors, slowness and pausing of movement, balance trouble on and on,), she asked questions, and did the physical tests. She didn't ask me to take my med to retest me. These were pretty much her words "You don't have PD, you have a parkinsonism disease (my husband interrupted her and asked the name, her answer) I don't know. I can tell you your too young for PD (at the time I was 46) and your tremor is not like Michael J. Fox's (she seriously said that, FYI my DO later named my tremor pill rolling, I personally never heard of it pill rolling) she continued to say "with your family history you are very highly susceptible to getting PD. You could get it next month but you don't have it today." That was it, with the help of my husband I made it to our vehicle, took the med and the symptom's got less and less until "poof" felt physically normal but again defeated by another "Dr." I did a follow up with my DO a month or so later, she hadn't sent him anything. Still he's yet to get any report from the movement Dr. May of this year I had to have my yearly physical and my DO asked me to come in a week or so early to get typical blood work done so he'd have the results at my physical. He asked me "don't take your meds 24 or hours before you come back for your physical". I said Ok. I could again barely walk. Stooped over, shuffling, tremor on and on. He tested me (same tests the movement Dr did). Take meds and said "while I'm giving you your physical we'll let them " kick in". As he's doing the ear checking, heart etc. I'm unaware (until he told me at the end) he's watching my tremor slowly go away, my speech is more together and my voice now even was tremoring off the med. About 45 mins later he retests me and everything is like "normal" the 75-80% of normal. My "new" normal. His words were "this is bullshit, I'm diagnosing you with PD, I don't care if I'm not an " official movement disorder Dr". He actually use to be a anesthesiologist Dr but has a hereditary movement tremor and went back to school. Anyways, I know this was crazy long (so sorry, I ramble, even in typing) and I still yet have gotten to my question. I've noticed the past month (seems to be getting more frequent) at night I'm dreaming I'm sitting on the toilet or sometimes maybe I do dream and can't remember the dream or I don't dream, not sure (I pee ALL the time and never use to and I get up many times at night and since getting "sick" and also have horrible constipation) and I'll wet myself. Sometimes the warm feeling will wake me, so I haven't wet the bed like full on like a child but my sheets have gotten damp, have to clean myself and change. Has this happened to anyone else? Again, sorry for the long introduction to a simple question.
  3. Hi. My name is Delise. I'm new to the forum, so before I actually ask my question I'll give you a bit (a lot) of background on me. I was diagnosed several months ago. After years of on going problems ; fatigue, severe cognitive issues, short term memory loss, left hand resting tremor, the feeling of concrete in my legs (many other issues but since my brain can't remember everything I'd have to look at our notes). Literally going from someone who was in top physical strength running 5+ miles, exercising and a Director of Marketing for a medical device company to barely able to walk without a cane. When all blood work, labs, MRI's all come back fine I started getting labeled with everything under the sun, stress, anxiety, somatization (psychological distress in physical symptoms), CFS, fibromyalgia, ME, depression, on and on. And going from Dr. to Dr. to get some sort of diagnosis. My family history with PD runs deep. My mother first was diagnosed with PD then with MSA (she only lived about 4 years after her diagnosis of MSA), both her parents had PD (died from other causes) and my maternal great grandmother also had PD (again, she died of other causes). My GP was no help, so when he got fired for peddling pain killers a new Dr. came on. A DO (Dr. of Osteopath) this was last year and for the first time I had a Dr. who listened and examined me. He said "I think it's MS or PD, so since you haven't had a spinal tap, lets get that and see." At this point in my life, I honesty didn't care what I had. I knew my body was sick, but with what? The spinal tap came back negative and honestly, I felt sad, defeated again (I know that sounds insane and stupid but I'd never been this "sick" hell, I never ever felt tired much less fatigued). When I returned to his office he said "let's try something, the meds for PD. If they work, we pretty much have our answer." I took them (first month I was so nauseated), but take the nausea away, the issues were going away. After the first month the nausea went away and I was walking almost normal, tremor no more, fatigue better, speaking (I paused a lot, said um, wrong words for things and I use to speak fluent with ease in front of hundreds of people), I was 75-80% back to normal. Went to 3 month follow up with DO and he and his nurse were astonished at my improvement and couldn't believe it as they had never seen me "well" he said it's PD no doubt. Let's get you to movement disorder Dr for diagnosis. Well, I waited 5 months to see her and in the mean time I was feeling great. Came time for appt. nurse called and said "be off your meds 24/48 hrs so she can test you first off and give you your meds and retest you." This is the same hospital that I'd seen neurologist, rheumatologist, infectiousness disease Dr's on and on. She came in sat at the computer and for the first 10 mins read the notes on me from other DR's (as I could barely sleep the last two nights crying with pain, legs stiff and like restless, tremors, slowness and pausing of movement, balance trouble on and on,), she asked questions, and did the physical tests. She didn't ask me to take my med to retest me. These were pretty much her words "You don't have PD, you have a parkinsonism disease (my husband interrupted her and asked the name, her answer) I don't know. I can tell you your too young for PD (at the time I was 46) and your tremor is not like Michael J. Fox's (she seriously said that, FYI my DO later named my tremor pill rolling, I personally never heard of it pill rolling) she continued to say "with your family history you are very highly susceptible to getting PD. You could get it next month but you don't have it today." That was it, with the help of my husband I made it to our vehicle, took the med and the symptom's got less and less until "poof" felt physically normal but again defeated by another "Dr." I did a follow up with my DO a month or so later, she hadn't sent him anything. Still he's yet to get any report from the movement Dr. May of this year I had to have my yearly physical and my DO asked me to come in a week or so early to get typical blood work done so he'd have the results at my physical. He asked me "don't take your meds 24 or hours before you come back for your physical". I said Ok. I could again barely walk. Stooped over, shuffling, tremor on and on. He tested me (same tests the movement Dr did). Take meds and said "while I'm giving you your physical we'll let them " kick in". As he's doing the ear checking, heart etc. I'm unaware (until he told me at the end) he's watching my tremor slowly go away, my speech is more together and my voice now even was tremoring off the med. About 45 mins later he retests me and everything is like "normal" the 75-80% of normal. My "new" normal. His words were "this is bullshit, I'm diagnosing you with PD, I don't care if I'm not an " official movement disorder Dr". He actually use to be a anesthesiologist Dr but has a hereditary movement tremor and went back to school. Anyways, I know this was crazy long (so sorry, I ramble, even in typing) and I still yet have gotten to my question. I've noticed the past month (seems to be getting more frequent) at night I'm dreaming I'm sitting on the toilet or sometimes maybe I do dream and can't remember the dream or I don't dream, not sure (I pee ALL the time and never use to and I get up many times at night and since getting "sick" and also have horrible constipation) and I'll wet myself. Sometimes the warm feeling will wake me, so I haven't wet the bed like full on like a child but my sheets have gotten damp, have to clean myself and change. Has this happened to anyone else? Again, sorry for the long introduction to a simple question.
  4. I have pill rolling in left hand but foot dragging in right leg. I know not normal PD, but can it happen? Been diagnosed.
  5. First, freaking LOVE the video! Second I've just been diagnosed with Parkinson's (a few months ago) but knew for year's something wasn't right. Oh and when people hear I have PD I HATE HEARING "oh my gosh, I'm so sorry" or "your too young". Bite me. Dr to Dr to Dr it's psychological, stress, on and on. Finally, one said MS or PD. Spinal tap normal,try carpadopa/levadopa and I finally started feeling better. I didn't start with tremors, so when fatigue and other symptom get thrown around before tremors (I do now) CFS is immediately diagnosed when blood work comes back normal. My mother died from MSA a rare parkinsonism disease. Her mother and father and grandmother on her mothers side (my maternal great grandmother) had Parkinson's. One movement Dr told me I had parkinsonism (I wasn't on any meds) and my husband asked from what "I don't know", she said and I didn't "tremor" like MJFox (I personally don't know how he tremors I said) and she said I was too young (I was 46, will be 47 this year, um MJF was under 30, just saying.....). She said you can get it tomorrow and with your family history you more than likely will get it but you don't have it today. Thanks.... Not what I said but I'm keeping it clean. Lol
  6. Hi. I'm new and this actually is my first ever post. I'm 45, I actually started with non-motor symptoms first. I was an extremely active person. Marathons, physical fitness, I never was a sleepy or tireds person. My Dr. suspected PD or MS (mainly PD as my mother had MSA, her mother and father, maternal grandmother all had PD). I had all test including spinal tap first to rule out MS. After that was negative he out me on carb/Levo 25/100. And it worked. I was experiencing horrible nausea and evening vomiting. I read it's best absorbed on an empty stomach. I was able to work up to that and could pop one and keep trucking. It's been around 6 or so months, I work on our farm and noticed working outside all day by the end of the day by legs feel like concrete, my legs would be bent like squatting, feet turned in, on and on. I read from others that more physical work the more your body uses. So, my Dr last week upped my dose 25/250. Any suggestions if my stomach will eventually settle down like before or would it help if my carbadopa was 50mg? Would it help if it took the 25/100 more often than 3 times a day? Just wondering what's helped for y'all. Thank you Delise