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Experiences with
Primary ciliary dyskinesia (PCD)
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Dyskinesia
I Was diagnosed with PD 5 years ago at age 72. I started out with Azilect, 1m per day and gradually added sinemet. I functioned very well (except for sleep-another story). I was able to work until a year ago. I changed to Rytary about a year ago and have had very even control. (10 per day of 36.25
I Was diagnosed with PD 5 years ago at age 72. I started out with Azilect, 1m per day and gradually added sinemet. I functioned very well (except for sleep-another story). I was able to work until a year ago. I changed to Rytary about a year ago and have had very even control. (10 per day of 36.25
lind-ane
in
Cure Parkinson's
8 years ago
reduce off-time
•Bial's drug for the treatment of Parkinson's disease in patients with motor fluctuations was approved by the European Commission, the Portuguese drugmaker said on Tuesday. •Ongentys (opicapone) is intended to be used as adjunctive therapy with levodopa and other standard Parkinson's disease treatments
•Bial's drug for the treatment of Parkinson's disease in patients with motor fluctuations was approved by the European Commission, the Portuguese drugmaker said on Tuesday. •Ongentys (opicapone) is intended to be used as adjunctive therapy with levodopa and other standard Parkinson's disease treatments
Hidden
in
Cure Parkinson's
8 years ago
Interstitial cystitis pain
Hi, my name is Erica and I'm hoping to speak to someone who suffers from my symptoms.
Hi, my name is Erica and I'm hoping to speak to someone who suffers from my symptoms.
Ericagrace
in
Pelvic Pain Support Network
8 years ago
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Is it OK to take Mucuna ALONG WITH Sinemet?
Must my dad back off/down Carbidopa-Levodopa in order to use the Mucuna Pruriens I ordered for him and am reordering since it does help sometimes? Will switching from 15% to 20% help? Will switching to powder help? Is there a better brand? He is NOT on Azilect. Is there another natural substance
Must my dad back off/down Carbidopa-Levodopa in order to use the Mucuna Pruriens I ordered for him and am reordering since it does help sometimes? Will switching from 15% to 20% help? Will switching to powder help? Is there a better brand? He is NOT on Azilect. Is there another natural substance
rsacdoolittle
in
Cure Parkinson's
8 years ago
Urinary tract infection and Bactrim
Hi there, I will just start by saying that this site is like no other and its been an incredible good help in dealing with my hypothyroidism! I have a couple of question I hope someone could help me with! I have had hypothyroidism about a year and in the last 2-3 month struggled with a returning urinary
Hi there, I will just start by saying that this site is like no other and its been an incredible good help in dealing with my hypothyroidism! I have a couple of question I hope someone could help me with! I have had hypothyroidism about a year and in the last 2-3 month struggled with a returning urinary
Anni85
in
Thyroid UK
8 years ago
Check out this article
Restoring
ciliary
function to differentiated
primary
ciliary
dyskinesia
cells with a lentiviral vector http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4124007/
Restoring
ciliary
function to differentiated
primary
ciliary
dyskinesia
cells with a lentiviral vector http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4124007/
fcfilice
in
PCD Family Support Group (UK)
8 years ago
Dyskinesia: Lessons from Africa
I have posted this as there are many voices against medication on here but many of us see meds as a life saver despite the problems. It's primary purpose is not to convince those who are convinced meds are bad. It's more to support those who are taking them and to give some reasons why they have made
I have posted this as there are many voices against medication on here but many of us see meds as a life saver despite the problems. It's primary purpose is not to convince those who are convinced meds are bad. It's more to support those who are taking them and to give some reasons why they have made
Hikoi
in
Cure Parkinson's
8 years ago
Difference between Sinemet and Madopar (Co-beneldopa)
A couple of days ago someone on this site asked me what the difference was between these two after I had posted that Sinemet made me confused whereas Madopar was almost miraculous in its effect. I'm afraid I can't find the original question but the difference is that Sinemet is ldopa combined with carbidopa
A couple of days ago someone on this site asked me what the difference was between these two after I had posted that Sinemet made me confused whereas Madopar was almost miraculous in its effect. I'm afraid I can't find the original question but the difference is that Sinemet is ldopa combined with carbidopa
pen1
in
Cure Parkinson's
8 years ago
Reoccurring cystitis :(
Hi ladies, can you help? I am having problems with cystitis after sex. It happens if we are intimate more than twice over a few days. I am so careful to shower and empty bladder after but I still keep getting the feeling of needing to go more often and my urine smells. What am I doing wrong? Thanks
Hi ladies, can you help? I am having problems with cystitis after sex. It happens if we are intimate more than twice over a few days. I am so careful to shower and empty bladder after but I still keep getting the feeling of needing to go more often and my urine smells. What am I doing wrong? Thanks
woolston27
in
Women's Health
8 years ago
URIDINE: Why LD/CD Users Should Consider It
*ATTENTION should be paid to Carbidopa/Benserazide and their irreversible, potentially lethal bond with pyridoxal 5'-phosphate. Note the following excerpt from a Oct,2014 PubMed abstract regarding (PLP) the active form of vitamin B6: "Both drugs irreversibly bind to and permanently deactivate pyridoxal
*ATTENTION should be paid to Carbidopa/Benserazide and their irreversible, potentially lethal bond with pyridoxal 5'-phosphate. Note the following excerpt from a Oct,2014 PubMed abstract regarding (PLP) the active form of vitamin B6: "Both drugs irreversibly bind to and permanently deactivate pyridoxal
whack-a-mole
in
Cure Parkinson's
8 years ago
How do you know if it is interstitial cystitis or a urinary infection?
I am taking antibiotics as I couldn't get to the GP last week but I had the typical groin pains associated with an infection. So the duty doctor prescribed some antibiotics over the phone. I'm halfway through them already and although energy wise I feel better today, the frequency has increased again
I am taking antibiotics as I couldn't get to the GP last week but I had the typical groin pains associated with an infection. So the duty doctor prescribed some antibiotics over the phone. I'm halfway through them already and although energy wise I feel better today, the frequency has increased again
FoggyMoggy
in
Fibromyalgia Action UK
8 years ago
Post period UTI Symptons
After some advice... Does anyone else have UTI Symptons after their period? I had a lap in Feb and had endo removed just had my 3rd cycle since lap and yet again I have UTI Symptons. During surgery they did a cystoscopy due to continued bladder problems and was told I have chronic cystitis which I
After some advice... Does anyone else have UTI Symptons after their period? I had a lap in Feb and had endo removed just had my 3rd cycle since lap and yet again I have UTI Symptons. During surgery they did a cystoscopy due to continued bladder problems and was told I have chronic cystitis which I
Elisamatthews11
in
Endometriosis UK
8 years ago
PositiveSam
Hi all, ive been diagnosed about 3 years now. I'm taking azilect 1 mg tablets and mirapexin 0.52 mg. finding sleeping can be biggest issue. Especially if I'm late taking medicin. I play tennis every day even twice. I try to carry on as normal.
Hi all, ive been diagnosed about 3 years now. I'm taking azilect 1 mg tablets and mirapexin 0.52 mg. finding sleeping can be biggest issue. Especially if I'm late taking medicin. I play tennis every day even twice. I try to carry on as normal.
Angelo65
in
Cure Parkinson's
8 years ago
Cystoscope and Bladder biopsies
Hi 2 years ago I had a urethral dilatation due to repeated uti's. 7 months ago the uti's stopped but I suffered monthly with cystitis blood but no infection. Weeks ago I was sent for yet another cystoscope that showed changes so washings were taken for cytology Results were inconclusive so on 13th
Hi 2 years ago I had a urethral dilatation due to repeated uti's. 7 months ago the uti's stopped but I suffered monthly with cystitis blood but no infection. Weeks ago I was sent for yet another cystoscope that showed changes so washings were taken for cytology Results were inconclusive so on 13th
hez64
in
Women's Health
8 years ago
Parkinson's and Exercise question
Advice from the experts. I have a question regarding exercise and parkinson’s. I read everywhere how good exercise is for people with parkinson’s. Every time I start exercising for a few days, my symptoms get worse and it appears to me anyway that the disease appears to progress. I will get new symptoms
Advice from the experts. I have a question regarding exercise and parkinson’s. I read everywhere how good exercise is for people with parkinson’s. Every time I start exercising for a few days, my symptoms get worse and it appears to me anyway that the disease appears to progress. I will get new symptoms
talan001
in
Cure Parkinson's
8 years ago
Nose bleeds
Has anyone had nosebleeds with Parkinsons? I bleed very little but I am not sure if it is related to the disease or its medications I am currently taking Sinemet, Amantadine and siliguine (probably spelled it wrong ) thank you!
Has anyone had nosebleeds with Parkinsons? I bleed very little but I am not sure if it is related to the disease or its medications I am currently taking Sinemet, Amantadine and siliguine (probably spelled it wrong ) thank you!
Hoffman123
in
Cure Parkinson's
8 years ago
Moved to the UK, any PCD specialists?
Hello guys, Let me start by introducing myself. I'm a 23 year old Canadian with Kartagener's. I'm a Radiographer, currently working in Newcastle. I was diagnosed at the age of 3-4 and been fine ever since. Im pretty active and I've been doing chest physio and nebulizers my whole life. (I no longer do
Hello guys, Let me start by introducing myself. I'm a 23 year old Canadian with Kartagener's. I'm a Radiographer, currently working in Newcastle. I was diagnosed at the age of 3-4 and been fine ever since. Im pretty active and I've been doing chest physio and nebulizers my whole life. (I no longer do
JDFarina
in
PCD Family Support Group (UK)
8 years ago
Endometriosis and intestinal cystitis
I saw a new gynae yesterday, I've already been diagnosed with endo but the gynae also suspects that I have intestinal cystitis. Has anyone else got these both together? How do you get diagnosed? What's the outlook?
I saw a new gynae yesterday, I've already been diagnosed with endo but the gynae also suspects that I have intestinal cystitis. Has anyone else got these both together? How do you get diagnosed? What's the outlook?
Joannaf78
in
Endometriosis UK
8 years ago
“emergency room” PT 2 - amantadine, benadryl and tremor dominant prognosis
I have just returned from second visit to my neuro in three weeks. I want to update my fellow parkies and especially those that have been following my adventure. After three years no drugs, I recently experienced trial run (about 1 month) let’s say of first sinemet and then, after stopping sinemet
I have just returned from second visit to my neuro in three weeks. I want to update my fellow parkies and especially those that have been following my adventure. After three years no drugs, I recently experienced trial run (about 1 month) let’s say of first sinemet and then, after stopping sinemet
Hidden
in
Cure Parkinson's
8 years ago
Urine Tract
Does any one else get cystitis or uti symptoms ? I've had the last 3-4 days a paint in my bladder area I would say the urine tract. It's really uncomfortable. Any help ?
Does any one else get cystitis or uti symptoms ? I've had the last 3-4 days a paint in my bladder area I would say the urine tract. It's really uncomfortable. Any help ?
Hidden
in
Endometriosis UK
8 years ago
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