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Experiences with
Primary ciliary dyskinesia (PCD)
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Misplaced L-dopa/C-dopa pills...
Twas the day before Christmas and I'm far away, From where my neurologist and family doctor stay. I refilled my pills, a three-month supply. But now I can't find them, I think I might cry. Tried calling my neuro, but his clinic is closed until day after tomorrow, I heard as I froze.
Twas the day before Christmas and I'm far away, From where my neurologist and family doctor stay. I refilled my pills, a three-month supply. But now I can't find them, I think I might cry. Tried calling my neuro, but his clinic is closed until day after tomorrow, I heard as I froze.
wordworks2001
in
Cure Parkinson's
12 years ago
Comtan
i have been treated for parkinson's since my diagnosis in 2009, but now am under going some further eval's and testing because the doc. thinks i may have something else, called msa. anyway he started me on comtan to take with my sinemet and mirapax to try and help with my "wearing off" periods in between
i have been treated for parkinson's since my diagnosis in 2009, but now am under going some further eval's and testing because the doc. thinks i may have something else, called msa. anyway he started me on comtan to take with my sinemet and mirapax to try and help with my "wearing off" periods in between
tmhiggs
in
Cure Parkinson's
12 years ago
Anyone trying LDN or interested in it?
I have recently had an appointment with my neurologist and, as expected, he told me basically that the only way to achieve a reasonable quality of life into the future is to have DBS surgery. He spoke of the risks, that not everyone is suitable etc etc. And that was it. DBS or continue to steadily decline
I have recently had an appointment with my neurologist and, as expected, he told me basically that the only way to achieve a reasonable quality of life into the future is to have DBS surgery. He spoke of the risks, that not everyone is suitable etc etc. And that was it. DBS or continue to steadily decline
batwing7
in
Cure Parkinson's
12 years ago
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Has anyone noticed the chemical smell that comes with taking Sinemet
I was taking Sinemet and Mirapex and gave up on the sinemet because i couldnt tolerate the smell of it.. Somehow this drug affected my sense of smell and everything i was exposed to. Coffee smelled terrible.. and even my breath had that chemical smell. One friend said he could tell if someone had pk
I was taking Sinemet and Mirapex and gave up on the sinemet because i couldnt tolerate the smell of it.. Somehow this drug affected my sense of smell and everything i was exposed to. Coffee smelled terrible.. and even my breath had that chemical smell. One friend said he could tell if someone had pk
Lawrencium
in
Cure Parkinson's
12 years ago
Did you know that only half of our disease is being treated?
It has long been known that we also lose a lot of our noradrenaline neurons too. Recent research shows that it may be that noradrenaline loss is primary cause of most PD symptoms including the motor ones. It also is looking like it is the locus of dyskinesia, So what does this mean for me? It means you
It has long been known that we also lose a lot of our noradrenaline neurons too. Recent research shows that it may be that noradrenaline loss is primary cause of most PD symptoms including the motor ones. It also is looking like it is the locus of dyskinesia, So what does this mean for me? It means you
Conductor71
in
Cure Parkinson's
12 years ago
Do anybody know if Zandopa would work without taking Sinemet? I've had PD for almost 15 years and have been on Mirapex and
Amanadine the entire time. I have a prescription for Sinemet, but am weary of starting it. I don't know if my medications have carbidopa? Do you know if it is necessary to take something with the Zandopa or does it contain carbidopa. Please help me if you can. Thanks. Also where did you order it from
Amanadine the entire time. I have a prescription for Sinemet, but am weary of starting it. I don't know if my medications have carbidopa? Do you know if it is necessary to take something with the Zandopa or does it contain carbidopa. Please help me if you can. Thanks. Also where did you order it from
maryalice
in
Cure Parkinson's
12 years ago
Amantadine Syrup
I've been diagnosed with PD since 2005...and have been on Amantadine 100 MG capsules, and other meds ever since. The effects of Amantadine capsules are dry throat, nose and eyes.My throat was so dry that I could feel the food I swallowed start to "stack up" and not go down. (This may sound weird, but
I've been diagnosed with PD since 2005...and have been on Amantadine 100 MG capsules, and other meds ever since. The effects of Amantadine capsules are dry throat, nose and eyes.My throat was so dry that I could feel the food I swallowed start to "stack up" and not go down. (This may sound weird, but
CJ49
in
Cure Parkinson's
12 years ago
Is anyone experiencing any of the OCD behavior from Mirapex?
I did but switched to Requip and the OCD is 99% gone. It does take care of the OCD better but also wears off quicker than Mirapex, made me very sleepy in afternoons and the tremors were a little more noticeable but it's worth the side affects to me.
I did but switched to Requip and the OCD is 99% gone. It does take care of the OCD better but also wears off quicker than Mirapex, made me very sleepy in afternoons and the tremors were a little more noticeable but it's worth the side affects to me.
PatrickW
in
Cure Parkinson's
12 years ago
Cystitis and thrush problems
Hi everyone I am new to this forum. I have had fibro for 2 years, all most to the date I went into a remission for about 2 months! as you can imagine I thought it had gone and was boasting about how well I was when bam it game back with full force. I got a reversal of my usual IBS symptoms from constipation
Hi everyone I am new to this forum. I have had fibro for 2 years, all most to the date I went into a remission for about 2 months! as you can imagine I thought it had gone and was boasting about how well I was when bam it game back with full force. I got a reversal of my usual IBS symptoms from constipation
vajrayogin1
in
Fibromyalgia Action UK
12 years ago
Anyone know how long the waiting list is for DBS at the National Hospital for Neurology and Neurosurgery, Queen Square, London?
Hi everyone, hope you are all okay. I had my consultation this week. I was told that the only option for me was DBS as medication is not working. Next step is to meet with the DBS Team at Queen Square. I am now left in a situation where I am simply trying to manage this rather precarious situation
Hi everyone, hope you are all okay. I had my consultation this week. I was told that the only option for me was DBS as medication is not working. Next step is to meet with the DBS Team at Queen Square. I am now left in a situation where I am simply trying to manage this rather precarious situation
Yogibear
in
Cure Parkinson's
12 years ago
Does any know what I should do?
To control my Parkinson I take 12 meds per day. Sinemet, Azilect, Mirapex and Amantadine. Diagnosis was 5 years ago @ 50y/o. I still work FT. My medication regimen works for a while then it is back to the MD and medications are changed and/or a new one added? MD wanted me to take 2 Mirapex 3x/day
To control my Parkinson I take 12 meds per day. Sinemet, Azilect, Mirapex and Amantadine. Diagnosis was 5 years ago @ 50y/o. I still work FT. My medication regimen works for a while then it is back to the MD and medications are changed and/or a new one added? MD wanted me to take 2 Mirapex 3x/day
dstarnes
in
Cure Parkinson's
12 years ago
Meds Experiment
Hi All, For the past few days i have stoped taking my Stalevo due to the side effects, that are flooring me , i am constantly sick and very shakie, so last week i said to my self sod it no more , as my Pd nurse is experimenting with me , i am also haveing a wee experament , and i have to say its working
Hi All, For the past few days i have stoped taking my Stalevo due to the side effects, that are flooring me , i am constantly sick and very shakie, so last week i said to my self sod it no more , as my Pd nurse is experimenting with me , i am also haveing a wee experament , and i have to say its working
Hidden
in
Cure Parkinson's
12 years ago
Fox Flash
Click here to view this message as HTML in your browser. VANDERBILT– BMS COLLABORATION LEVERAGING MJFF INVESTMENT COULD PUSH NEW PARADIGM OF SYMPTOMATIC TREATMENT TO THE CLINIC BY 2013 On the heels of nearly $5 million in Michael J. Fox Foundation (MJFF) investment, Vanderbilt University today announced
Click here to view this message as HTML in your browser. VANDERBILT– BMS COLLABORATION LEVERAGING MJFF INVESTMENT COULD PUSH NEW PARADIGM OF SYMPTOMATIC TREATMENT TO THE CLINIC BY 2013 On the heels of nearly $5 million in Michael J. Fox Foundation (MJFF) investment, Vanderbilt University today announced
Hidden
in
Cure Parkinson's
12 years ago
suggestions please? anyone?
hi everyone, i know everyone responds differently on meds, but i am going to ask anyway. i currently take sinemet and mirapex every 2 hrs and it doesn't seem to work for me very well. i mention to my doc all the time n all he ever does for me is increase the frequency of my doses (which alot of times
hi everyone, i know everyone responds differently on meds, but i am going to ask anyway. i currently take sinemet and mirapex every 2 hrs and it doesn't seem to work for me very well. i mention to my doc all the time n all he ever does for me is increase the frequency of my doses (which alot of times
tmhiggs
in
Cure Parkinson's
12 years ago
Drugs for Parkinson's- how do you spell their names?
This is not really a question, more an attempt to answer it. I have noticed many different spellings being used, and I bought a book about Parkinson's which includes drug names. The most commonly used drugs seem to be Madopar Sinemet Mirapexin also known as pramipexole Requip
This is not really a question, more an attempt to answer it. I have noticed many different spellings being used, and I bought a book about Parkinson's which includes drug names. The most commonly used drugs seem to be Madopar Sinemet Mirapexin also known as pramipexole Requip
Cerelia
in
Cure Parkinson's
12 years ago
Play Up and Play the Game (Bully off)
A cracking game is in prospect, here at the PM Stadium. The PWPs have a strong line up and are expected to put some pressure on the PDs. The bookmakers however favour the PDs as they have never lost this fixture. The PWPs take to the field led by their captain James Parkinson a long time favourite
A cracking game is in prospect, here at the PM Stadium. The PWPs have a strong line up and are expected to put some pressure on the PDs. The bookmakers however favour the PDs as they have never lost this fixture. The PWPs take to the field led by their captain James Parkinson a long time favourite
anthonyjohnrobinson
in
Cure Parkinson's
12 years ago
experiencing invisible tremors
I have for the most part invisible tremors,it took longer to get a dx, but the tremors are every bit as real, and are starting to move out. I take requip three times a day, azilect once a day and amantadine twice a day. It helps a lot but the tremors are strong in the morning, anyone else have much experience
I have for the most part invisible tremors,it took longer to get a dx, but the tremors are every bit as real, and are starting to move out. I take requip three times a day, azilect once a day and amantadine twice a day. It helps a lot but the tremors are strong in the morning, anyone else have much experience
olpilot
in
Cure Parkinson's
12 years ago
For all that want to know what Michael J Fox new drug regimen is here you go.
It's Official: Michael J. Fox Has a New Show! (So Is He on a New Drug?) Posted by Holly Barkhymer, August 22, 2012 As you've probably heard by now, Michael J. Fox is set to create and star in his first sitcom since "Spin City"! The as-yet-untitled comedy will premier on NBC in fall 2013 and will
It's Official: Michael J. Fox Has a New Show! (So Is He on a New Drug?) Posted by Holly Barkhymer, August 22, 2012 As you've probably heard by now, Michael J. Fox is set to create and star in his first sitcom since "Spin City"! The as-yet-untitled comedy will premier on NBC in fall 2013 and will
WayneP
in
Cure Parkinson's
12 years ago
Pains in Hip, Knees and Thighs
Background - I have ben taking Sinemet Plus for about 6 years, Amantadine for about the same and Azilect for about 4 years Question - As I have seen many references to pains in the hip and knee (like arthritis) and thigh (like you've been overworking them) I wondered if these pains are a side effect
Background - I have ben taking Sinemet Plus for about 6 years, Amantadine for about the same and Azilect for about 4 years Question - As I have seen many references to pains in the hip and knee (like arthritis) and thigh (like you've been overworking them) I wondered if these pains are a side effect
froggatt55
in
Cure Parkinson's
12 years ago
Is there any help after a shopping addiction while on Mirapex?
I was on Mirapex for about 9 months, and ran up about $30,000 due to shopping addiction. I've been off of it for about 6 months and just now getting to where it isn't a daily struggle. Does anyone know if there is legal recourse for this side effect? The doctor did warn me of possible OCB. But have to
I was on Mirapex for about 9 months, and ran up about $30,000 due to shopping addiction. I've been off of it for about 6 months and just now getting to where it isn't a daily struggle. Does anyone know if there is legal recourse for this side effect? The doctor did warn me of possible OCB. But have to
minicoopmom
in
Cure Parkinson's
12 years ago
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