Search
Search
About
Log in
Join
Experiences with
Primary ciliary dyskinesia (PCD)
Posts
Communities
738 public posts
Filter results
Inflammed Trigone, not Interstitial Cystitis 😕 please help me! 😢
Hey ladies, I’ve posted a few times recently about my horrible symptoms - peeing every hour of the day and the night, burning and irritation of the bladder like a UTI although my samples come back negative when tested for bacteria, pain during and after sex and sharp stabbing pains. I also have minimal
Hey ladies, I’ve posted a few times recently about my horrible symptoms - peeing every hour of the day and the night, burning and irritation of the bladder like a UTI although my samples come back negative when tested for bacteria, pain during and after sex and sharp stabbing pains. I also have minimal
BethanyAnn
in
Endometriosis UK
6 years ago
Alternative treatment other than sinemet
Hi, my PD issue is mostly stiffness on my right side and shifted jaw (hard to eat) only tremor when facing some nerveousness. Thingking if there is a better alternative than taking sinemet that less side effect.Any advices? Marty hintz amino acid protocol, mucuna + tyrosine + 5htp or mucuna+ green tea
Hi, my PD issue is mostly stiffness on my right side and shifted jaw (hard to eat) only tremor when facing some nerveousness. Thingking if there is a better alternative than taking sinemet that less side effect.Any advices? Marty hintz amino acid protocol, mucuna + tyrosine + 5htp or mucuna+ green tea
Mosieta
in
Cure Parkinson's
6 years ago
Question for those on Amantadine
I have just started to take it along with the sinemet (9 daily). Wondering if I should take it at the same time or at a different time? My doctor said it should not matter. I am not up to the full dose yet, but will be taking 3 a day. Any tips? It is too early to know for sure, but so far I am feeling
I have just started to take it along with the sinemet (9 daily). Wondering if I should take it at the same time or at a different time? My doctor said it should not matter. I am not up to the full dose yet, but will be taking 3 a day. Any tips? It is too early to know for sure, but so far I am feeling
Michele11
in
Cure Parkinson's
6 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Ca 125 test is 135
Hi everyone, I am new to this site. I am waiting for an ultrasound to see if i have ovarian cancer. I am 45 and extremely worried. Anyone else in the same siruation who can offer advise please?
Hi everyone, I am new to this site. I am waiting for an ultrasound to see if i have ovarian cancer. I am 45 and extremely worried. Anyone else in the same siruation who can offer advise please?
Michellek1972
in
Asthma Community Forum
6 years ago
amantadine and sinemet induced dyskinesia?
hi,im using sinemet and mirapex (Pramipexole) for 5 years -im suffering from slow movment and tremors -i also suffer from sinemet induced dyskinesia -i heard about amantadine and its great for tremor and sinemet induced dyskinesia but im out of my country and cant see my doctor-i have 2 questions and
hi,im using sinemet and mirapex (Pramipexole) for 5 years -im suffering from slow movment and tremors -i also suffer from sinemet induced dyskinesia -i heard about amantadine and its great for tremor and sinemet induced dyskinesia but im out of my country and cant see my doctor-i have 2 questions and
jack-carpenter12
in
Cure Parkinson's
6 years ago
Professional nutritional support for PWP in the UK
I am looking for a knowledgeable nutritionist, ideally in London, able to provide individualized advice on good nutrition e.g. for slowing progression, correcting weight loss, supporting intense exercise and solving interaction problems with Parkinsons's meds. Any recommendations? New'ish on this site
I am looking for a knowledgeable nutritionist, ideally in London, able to provide individualized advice on good nutrition e.g. for slowing progression, correcting weight loss, supporting intense exercise and solving interaction problems with Parkinsons's meds. Any recommendations? New'ish on this site
Kevin51
in
Cure Parkinson's
6 years ago
Issues getting Zentiva made Hydroxychloroquine and alternative manufacturers
Hi all, this is a repeat of a reply I put to a recent post on availability of Zentiva locally to me in Sussex to see if its everywhere or just my local supply chain. All I want to do is just be given the medication that makes me able to function sort of normally... and not have to see if I can get on
Hi all, this is a repeat of a reply I put to a recent post on availability of Zentiva locally to me in Sussex to see if its everywhere or just my local supply chain. All I want to do is just be given the medication that makes me able to function sort of normally... and not have to see if I can get on
CheddarAddict
in
Hughes Syndrome APS Forum
7 years ago
Does anyone suffer from cystitis?
Hi, I suffer with endo. Recently after every period I find to suffer from cystitis? I know there isn't a link between this and endo, but I just wondered if anybody else with endo experienced this too?
Hi, I suffer with endo. Recently after every period I find to suffer from cystitis? I know there isn't a link between this and endo, but I just wondered if anybody else with endo experienced this too?
sophiagabrielle
in
Endometriosis UK
6 years ago
Living with PCD
During my last surgery my doctor diagnosed me with
Primary
Ciliary
Dyskinesia
. It didn't really effect me at first until I realized I have to live with this my whole life. Due to me missing school no one really takes me seriously and looks down on me.
During my last surgery my doctor diagnosed me with
Primary
Ciliary
Dyskinesia
. It didn't really effect me at first until I realized I have to live with this my whole life. Due to me missing school no one really takes me seriously and looks down on me.
GwenVG
in
PCD Family Support Group (UK)
7 years ago
Underwhelmed by Madopar
Hi gang. Is this drug meant to work instantly with ones symptoms or do you need few weeks and aggregate an amount in your system? I’m very surprised at how little difference it makes to my symptoms considering it’s the gold standard etc. I certainly had my honeymoon period with both Azilect and Requip
Hi gang. Is this drug meant to work instantly with ones symptoms or do you need few weeks and aggregate an amount in your system? I’m very surprised at how little difference it makes to my symptoms considering it’s the gold standard etc. I certainly had my honeymoon period with both Azilect and Requip
jeeves19
in
Cure Parkinson's
7 years ago
I AM A HOT MESS
Im starting to think I will never be even as good as I was even before my last med change, on the 28th of Nov my Dr took me off the Azilect and wants to add amantadine and Lexapro ins is questioning the amantadine but I did start the Lexapro on day 2 I started having panic attacks now I feel so out
Im starting to think I will never be even as good as I was even before my last med change, on the 28th of Nov my Dr took me off the Azilect and wants to add amantadine and Lexapro ins is questioning the amantadine but I did start the Lexapro on day 2 I started having panic attacks now I feel so out
Boomercd
in
Cure Parkinson's
7 years ago
Shouting out during sleep
Hi everyone my name is Shelley G. I was diagnosed with PD just last month , but truly think I have had it longer and was just not discovered till now. I have a question about sleeping, I have been having very vivid dreams and shout out and kick a lot lately and have never done it before, ( I only take
Hi everyone my name is Shelley G. I was diagnosed with PD just last month , but truly think I have had it longer and was just not discovered till now. I have a question about sleeping, I have been having very vivid dreams and shout out and kick a lot lately and have never done it before, ( I only take
Shakinginnc
in
Cure Parkinson's
7 years ago
Kidney stones
Summer season is ahead. In order to prevent Kidney stones, one should drink plenty of fluids, particularly water. Types of kidney stones include: Calcium stones. Most kidney stones are calcium stones, usually in the form of calcium oxalate. Calcium stones are the most common type of kidney stones
Summer season is ahead. In order to prevent Kidney stones, one should drink plenty of fluids, particularly water. Types of kidney stones include: Calcium stones. Most kidney stones are calcium stones, usually in the form of calcium oxalate. Calcium stones are the most common type of kidney stones
gangadharan_nair
in
Diabetes India
6 years ago
Levodopa Medications and Vitamin B6
Introduction
Vitamin B6 is a cofactor in over 100 enzymatic reactions. In the process it is converted from the active form, principally P5P (pyridoxal-5-phosphate), to the inactive form, pyridoxine. An excess of pyridoxine is toxic because it occupies sites that require the active form. For this
Introduction
Vitamin B6 is a cofactor in over 100 enzymatic reactions. In the process it is converted from the active form, principally P5P (pyridoxal-5-phosphate), to the inactive form, pyridoxine. An excess of pyridoxine is toxic because it occupies sites that require the active form. For this
park_bear
in
Cure Parkinson's
7 years ago
FREE WEBINAR TONIGHT!
Participate in a live webinar As part of
Primary
Ciliary
Dyskinesia
Week at the ATS, and in conjunction with PAR partner, the PCD Foundation, the ATS will present a live webinar on Tues, Oct 10th @ 2:00 pm ET.
Participate in a live webinar As part of
Primary
Ciliary
Dyskinesia
Week at the ATS, and in conjunction with PAR partner, the PCD Foundation, the ATS will present a live webinar on Tues, Oct 10th @ 2:00 pm ET.
N123
in
PCD Family Support Group (UK)
7 years ago
I need some advice from the Pros!
In my last post i told everyone that i had to get rid of my Parkie Dr. I am not able to see someone else until Jan 2nd.remember i thought i was having some dyskenisias and the Dr was rude to me about my questions and concerns.So now i am having troubles! If i take 3 pills a day 25/100 C/L i have this
In my last post i told everyone that i had to get rid of my Parkie Dr. I am not able to see someone else until Jan 2nd.remember i thought i was having some dyskenisias and the Dr was rude to me about my questions and concerns.So now i am having troubles! If i take 3 pills a day 25/100 C/L i have this
RS313
in
Cure Parkinson's
7 years ago
24 hour sinemet. Why not?
Why can't they make a sinemet formulation that slowly breaks down over a 24 hour period so we can have constant benefit even at night? They already have sinement CR which works over a 4 hour period. It should be easy to make. Just have a pill for example that releases 100 mg of levodopa and 50 mg
Why can't they make a sinemet formulation that slowly breaks down over a 24 hour period so we can have constant benefit even at night? They already have sinement CR which works over a 4 hour period. It should be easy to make. Just have a pill for example that releases 100 mg of levodopa and 50 mg
rhenry45
in
Cure Parkinson's
7 years ago
Change of Meds
Hi beautiful people! My mum is in the hospital. They think she has somatization issues and that she is making up her symptoms. They say she can move she just doesn't want to. I trust my mom and she said that when they changed her meds from carbadopa levodopa to Mirapex, it's like the stiffness increased
Hi beautiful people! My mum is in the hospital. They think she has somatization issues and that she is making up her symptoms. They say she can move she just doesn't want to. I trust my mom and she said that when they changed her meds from carbadopa levodopa to Mirapex, it's like the stiffness increased
ElizabethDavis50
in
Cure Parkinson's
7 years ago
Primary ciliary dyskinesia: mechanisms and management
A research paper outlining mechanism and management of PCD. http://bit.ly/2hNUkYX Happy readings x
A research paper outlining mechanism and management of PCD. http://bit.ly/2hNUkYX Happy readings x
N123
in
PCD Family Support Group (UK)
7 years ago
Holding Out
I held out for 6 years. My poor old school but good man neurologist thought I was taking them. I was in a quandry because I needed some meds in 2016 but needed the lower starting doses that he put me on years back in 2013 and an up to date review. Diagnosed in 2010 btw. So he retired suddenly. I went
I held out for 6 years. My poor old school but good man neurologist thought I was taking them. I was in a quandry because I needed some meds in 2016 but needed the lower starting doses that he put me on years back in 2013 and an up to date review. Diagnosed in 2010 btw. So he retired suddenly. I went
NvaGivUp
in
Cure Parkinson's
7 years ago
1
...
21
22
23
...
37
Next page
10
20
30
Filter results
Clear filters
Posted in
All communities
Cure Parkinson's
485 results
Endometriosis UK
77 results
Thyroid UK
34 results
View top 10 communities
Sort by
Most Relevant
Newest