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Experiences with
Primary ciliary dyskinesia (PCD)
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Sinemet / carbidopa levodopa
“In 1988, the U.S. Food and Drug Administration (FDA) is recommended that the daily dose of Sinemet should not exceed 800 mg per day, and as of 2013, this recommendation has not been revised. In 2018 the labeling of Sinemet recommends not exceeding a levodopa total daily dose of 2,000 mg per day. As
“In 1988, the U.S. Food and Drug Administration (FDA) is recommended that the daily dose of Sinemet should not exceed 800 mg per day, and as of 2013, this recommendation has not been revised. In 2018 the labeling of Sinemet recommends not exceeding a levodopa total daily dose of 2,000 mg per day. As
Hidden
in
Cure Parkinson's
3 years ago
What improvements can we anticipate within 10-15 years?
I am not seeking false hope nor do I want to perpetuate it but I do think there will be more treatments within the next 10-15 years. A off the top of my head list: There may be stem cells for PWP. Perhaps intravenous like the UT trial. There may be personalized cell therapy (pluripotent neurons
I am not seeking false hope nor do I want to perpetuate it but I do think there will be more treatments within the next 10-15 years. A off the top of my head list: There may be stem cells for PWP. Perhaps intravenous like the UT trial. There may be personalized cell therapy (pluripotent neurons
Hidden
in
Cure Parkinson's
3 years ago
What could be the cause of restless leg syndrome
Recently added the following to my husband’s routine and he seemed to be more alert but this morning saw his left leg shaking intermittently 1. Coffee cherry 200 mg increased to 2x a day Suppose to increase BDNF by 141% 2. Ubiquinol 200 mg increased to 3x a day 3. Tryptophan 1000 mg at bed time
Recently added the following to my husband’s routine and he seemed to be more alert but this morning saw his left leg shaking intermittently 1. Coffee cherry 200 mg increased to 2x a day Suppose to increase BDNF by 141% 2. Ubiquinol 200 mg increased to 3x a day 3. Tryptophan 1000 mg at bed time
Millbrook
in
Cure Parkinson's
3 years ago
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PTT FUS 4 months later
I had today my 3 months phone consultation with Prof. J. (one month later). He saw my videos, with and without levodopa e said that i was "very close to normal". Indeed, sometimes i feel close to normal, not everyday, not every hour, but especially in the morning i feel like that. I am able to run again
I had today my 3 months phone consultation with Prof. J. (one month later). He saw my videos, with and without levodopa e said that i was "very close to normal". Indeed, sometimes i feel close to normal, not everyday, not every hour, but especially in the morning i feel like that. I am able to run again
Markbit
in
Cure Parkinson's
3 years ago
My husbands face to face visit with his Neuro!
My husband had a face to face visit to his Neuro yesterday, not seen him since before the lockdown, October 2019 although he has had one telephone appointment. The Neuro asked him how he was what dosage of meds he was on, watched him walking, tested his hands said he was fine for driving, as that is
My husband had a face to face visit to his Neuro yesterday, not seen him since before the lockdown, October 2019 although he has had one telephone appointment. The Neuro asked him how he was what dosage of meds he was on, watched him walking, tested his hands said he was fine for driving, as that is
Zella23
in
Cure Parkinson's
3 years ago
B1 Testimony
COPY from today, May7, 2021: “Diagnosed Nov2014. I admit I was dubious, but after some time on B1 I have to concur with Roy; it did improve many symptoms. I can speak more loudly and clearly; swallowing is easier; I simply can do more than before I started taking this supplement. Buttons, turning over
COPY from today, May7, 2021: “Diagnosed Nov2014. I admit I was dubious, but after some time on B1 I have to concur with Roy; it did improve many symptoms. I can speak more loudly and clearly; swallowing is easier; I simply can do more than before I started taking this supplement. Buttons, turning over
Hidden
in
Cure Parkinson's
3 years ago
Gocovri
Has anyone tried Gocovri for dyskenesia? I have been taking generic syrup for Amantadine and want to try continuous release Gocovri.
Has anyone tried Gocovri for dyskenesia? I have been taking generic syrup for Amantadine and want to try continuous release Gocovri.
ladya2020
in
Cure Parkinson's
3 years ago
New Video: Reflections on Parkinson’s Disease Podcast – EP2: Motor Fluctuations and the levodopa long-duration response
Another excellent podcast! https://www.oruen.com/podcasts/reflections-on-parkinsons-disease-podcast-ep-2-motor-fluctuations-and-the-levodopa-long-duration-response
Another excellent podcast! https://www.oruen.com/podcasts/reflections-on-parkinsons-disease-podcast-ep-2-motor-fluctuations-and-the-levodopa-long-duration-response
Hidden
in
Cure Parkinson's
3 years ago
Wearing Off or Dyskinesia
Wearing Off or Dyskinesia Author: Jill Marjama-Lyons, MD and Mary J. Shoman ….possible changes to your medicines…discuss with your doctor. •Use Sinemet CR (controlled release) or Sinemet ER (extended release). •Add a dopamine agonist. •Add a COMT inhibitor to Sinemet (immediate release, CR form
Wearing Off or Dyskinesia Author: Jill Marjama-Lyons, MD and Mary J. Shoman ….possible changes to your medicines…discuss with your doctor. •Use Sinemet CR (controlled release) or Sinemet ER (extended release). •Add a dopamine agonist. •Add a COMT inhibitor to Sinemet (immediate release, CR form
Hidden
in
Cure Parkinson's
3 years ago
Interstitial cystitis/painful bladder syndrome and endometriosis?
Hi, I have a laparoscopy booked next week to look for endometriosis, which my consultant thinks may be linked to my interstitial cystitis symptoms- does anyone else have this? Do you have any advice on how to manage it? I had my mirena coil removed for the surgery at the surgeons request and now my
Hi, I have a laparoscopy booked next week to look for endometriosis, which my consultant thinks may be linked to my interstitial cystitis symptoms- does anyone else have this? Do you have any advice on how to manage it? I had my mirena coil removed for the surgery at the surgeons request and now my
alicexmae
in
Endometriosis UK
3 years ago
Levodopa =? Dyskinesia
I take levodopa (2 pills x 200 mg throughout the day) to turn me on. Also it helps to reduce my arm's tremor. It does help, but also brings involuntary movements, even hyperactivity I'd say. Mostly it's my upper body (like I'm dancing or something). And it seems as such a waste of life energy. Is there
I take levodopa (2 pills x 200 mg throughout the day) to turn me on. Also it helps to reduce my arm's tremor. It does help, but also brings involuntary movements, even hyperactivity I'd say. Mostly it's my upper body (like I'm dancing or something). And it seems as such a waste of life energy. Is there
b-erec
in
Cure Parkinson's
3 years ago
Ongentys this medication WORKS!
I've been using this med for 6 months, with very positive results. I posted on this before and was surprised on the apparent low interest. Back in October 2020 I complained to my Neuro, my Sinemet was wearing off suddenly. I went from being totally functional to frozen in seconds. Also my dosage regimen
I've been using this med for 6 months, with very positive results. I posted on this before and was surprised on the apparent low interest. Back in October 2020 I complained to my Neuro, my Sinemet was wearing off suddenly. I went from being totally functional to frozen in seconds. Also my dosage regimen
Isthistheone
in
Cure Parkinson's
3 years ago
Swollowing
I'm 60 yo diagnosed with PD 10 years ago I can honestly say my symptoms have not changed much recently diagnosed with generalized anxiety disorder and have infrequent moments where I forget how to swollow is it PD GAD or just age related usually only last a few seconds and if I think about it it
I'm 60 yo diagnosed with PD 10 years ago I can honestly say my symptoms have not changed much recently diagnosed with generalized anxiety disorder and have infrequent moments where I forget how to swollow is it PD GAD or just age related usually only last a few seconds and if I think about it it
Boomercd
in
Cure Parkinson's
3 years ago
Sinemet Slow-release Hard Candy
Has anyone tried making a home-made slow-release levodopa lozenge or hard candy that you can suck on and have constant levels of dopamine in your system?
Has anyone tried making a home-made slow-release levodopa lozenge or hard candy that you can suck on and have constant levels of dopamine in your system?
DeanGreen
in
Cure Parkinson's
3 years ago
Is edema a side effect of RYTARY?
[i]I noticed some edema in my foot and ankles when first trying medications for PD. I tried Sinemet but also tried amantadine and ropinerole. I never knew which medication caused the edema. Now I'm on Rytary alone and edema is back. I wore shorts today and both the neuro and my wife noticed
[i]I noticed some edema in my foot and ankles when first trying medications for PD. I tried Sinemet but also tried amantadine and ropinerole. I never knew which medication caused the edema. Now I'm on Rytary alone and edema is back. I wore shorts today and both the neuro and my wife noticed
kaypeeoh
in
Cure Parkinson's
3 years ago
Anxiety & Dyskinesia
My wife was first diagnosed about 10 years ago and has been taking Sinemet for about 5 years which has kept her Bradykesia in check and allowed her to live a reasonably normal life. Of late though she has started to experience random short attacks of involuntary and uncontrollable movements of her body
My wife was first diagnosed about 10 years ago and has been taking Sinemet for about 5 years which has kept her Bradykesia in check and allowed her to live a reasonably normal life. Of late though she has started to experience random short attacks of involuntary and uncontrollable movements of her body
thfc1961
in
Cure Parkinson's
3 years ago
Jaw pain with PSP?
My husband was only diagnosed with PSP two weeks ago and is already on hospice care. He was in hospital and rehab and just came home yesterday. Now his jaw is hurting very badly. I thought it was a toothache, but happened to notice a passing comment about jaw pain on a PSP page. Is this common? It
My husband was only diagnosed with PSP two weeks ago and is already on hospice care. He was in hospital and rehab and just came home yesterday. Now his jaw is hurting very badly. I thought it was a toothache, but happened to notice a passing comment about jaw pain on a PSP page. Is this common? It
WindyGirl
in
PSP Association
3 years ago
Help me understand dyskinesia and how best to prevent
I gave read a lot on dyskinesia but still some confusion and fear it’s coming. Can you tell me what experience you have with dyskinesia, symptoms, when started and mostly how to prevent.
I gave read a lot on dyskinesia but still some confusion and fear it’s coming. Can you tell me what experience you have with dyskinesia, symptoms, when started and mostly how to prevent.
PD_Partner
in
Cure Parkinson's
3 years ago
Anyone used Prof J. Malone-Lee's approach for Chronic UTIs?
Hi, I've just discovered this book by Prof James Malone-Lee and wondered if anyone has had any luck in getting this type of treatment from the NHS? https://www.amazon.co.uk/Cystitis-Unmasked-James-Malone-Lee/dp/1910079634/ref=sr_1_1?dchild=1&keywords=cystitis&qid=1618603818&s=books&sr=1-1 I've currently
Hi, I've just discovered this book by Prof James Malone-Lee and wondered if anyone has had any luck in getting this type of treatment from the NHS? https://www.amazon.co.uk/Cystitis-Unmasked-James-Malone-Lee/dp/1910079634/ref=sr_1_1?dchild=1&keywords=cystitis&qid=1618603818&s=books&sr=1-1 I've currently
Chancery
in
Pelvic Pain Support Network
3 years ago
Endometriosis in the News (hysterectomy, urinary tract, bowels)
Hi all. https://www.bbc.co.uk/news/uk-northern-ireland-56737353 Endometriosis: Young woman pleading for hysterectomy I have just seen this on BBC News. What I found interesting is that she talks about her fight to get the correct treatment, also about the fact that the endometriosis has spread to the
Hi all. https://www.bbc.co.uk/news/uk-northern-ireland-56737353 Endometriosis: Young woman pleading for hysterectomy I have just seen this on BBC News. What I found interesting is that she talks about her fight to get the correct treatment, also about the fact that the endometriosis has spread to the
Anastasia17
in
Endometriosis UK
3 years ago
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