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Primary ciliary dyskinesia (PCD)
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Hospital Assessment
Hi Everyone, Des has been in hospital for 10 days now. I am seeing a social worker this afternoon and hope to get carers coming in when they send him home.If they need 2 carers to move him do they not see that 1 72year old is struggling at home?. Some days have been good but Sunday they said there were
Hi Everyone, Des has been in hospital for 10 days now. I am seeing a social worker this afternoon and hope to get carers coming in when they send him home.If they need 2 carers to move him do they not see that 1 72year old is struggling at home?. Some days have been good but Sunday they said there were
loppylugs5
in
PSP Association
9 years ago
DBS
I had DBS surgery in August & chose the asleep method done at UCSF. It's been slow going as my Graves Disease came to life again after being removed with radioactive iodine 10 yrs ago. We are still fine tuning & keep hoping for solutions. I take comtan & car/levo every hour & 45 minutes. The only
I had DBS surgery in August & chose the asleep method done at UCSF. It's been slow going as my Graves Disease came to life again after being removed with radioactive iodine 10 yrs ago. We are still fine tuning & keep hoping for solutions. I take comtan & car/levo every hour & 45 minutes. The only
wynn7
in
Cure Parkinson's
10 years ago
Why start treatment with levodopa?
I was diagnosed in the dopamine agonist era, treatment to start with agonists, supplemented with MAOb inhibitor. The aim was to delay taking levodopa as long as possible which in turn would delay onset of motor fluctuations and dyskinesia. Inevitably, the loss of dopamine was not matched by agonist
I was diagnosed in the dopamine agonist era, treatment to start with agonists, supplemented with MAOb inhibitor. The aim was to delay taking levodopa as long as possible which in turn would delay onset of motor fluctuations and dyskinesia. Inevitably, the loss of dopamine was not matched by agonist
grey
in
Cure Parkinson's
10 years ago
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Interstitial cystitis....what a pain :-( help
Finally managed to get a referral for my symptoms of interstitial cystitis which have plagued me on and off for 12 years but Have in the past been continually fobbed off with antibiotics. My consultant is lovely, he listened to me as if I knew what I was talking about, asked me simple questions and within
Finally managed to get a referral for my symptoms of interstitial cystitis which have plagued me on and off for 12 years but Have in the past been continually fobbed off with antibiotics. My consultant is lovely, he listened to me as if I knew what I was talking about, asked me simple questions and within
Chablis
in
LUPUS UK
10 years ago
Stalevo meds for pd
Hi ,I've been stalevo for quite a few months ,I think I'm better on stalevo than sinemet I had pain every time I took the pain four times a day.went bk to neurologist he put me on higher dose age every 3 hours 150/25 I know take it 6 times a day and was missing my times and not being very punctual
Hi ,I've been stalevo for quite a few months ,I think I'm better on stalevo than sinemet I had pain every time I took the pain four times a day.went bk to neurologist he put me on higher dose age every 3 hours 150/25 I know take it 6 times a day and was missing my times and not being very punctual
Shol
in
Cure Parkinson's
10 years ago
Daily living
So frustrating! G is a smart man and sometimes that can be good and at others down right bad. We've both been sick since thanksgiving. We've had the norro-virus. Started feeling better from that on Tuesday. Then on Wednesday we both started with an upper respiratory virus. Not fun. Needless to say,
So frustrating! G is a smart man and sometimes that can be good and at others down right bad. We've both been sick since thanksgiving. We've had the norro-virus. Started feeling better from that on Tuesday. Then on Wednesday we both started with an upper respiratory virus. Not fun. Needless to say,
vsm0001
in
PSP Association
10 years ago
My schedule of meds
I was prescribe w/PD in 2010 and all know the sin toms that we experience, im taking 4 times a day CARDIDOPA.LEVADOPA 1 tab every morning AMANTADINE, and at lunch 1 tab of BENZTROPINE for stiffness unti my wife found that CO cures PD I just started and my question is shall i still take the meds with
I was prescribe w/PD in 2010 and all know the sin toms that we experience, im taking 4 times a day CARDIDOPA.LEVADOPA 1 tab every morning AMANTADINE, and at lunch 1 tab of BENZTROPINE for stiffness unti my wife found that CO cures PD I just started and my question is shall i still take the meds with
serg
in
Cure Parkinson's
10 years ago
Requip
A new neurologist wants me to take re quip with the sinemet and then reduce the sinemet. I am taking 25/100 4x of sinemet at present. Has anyone done this with success? The sinemet gives me swallowing problems and dyskinesia. Also anyone take LDN with requip? I am also having major problems with off
A new neurologist wants me to take re quip with the sinemet and then reduce the sinemet. I am taking 25/100 4x of sinemet at present. Has anyone done this with success? The sinemet gives me swallowing problems and dyskinesia. Also anyone take LDN with requip? I am also having major problems with off
michaela13
in
Cure Parkinson's
10 years ago
may you all have a Merry Christmas and a Happy New Year
Dx two years ago and at that time was not upset. In the first weeks that followed, as I researched, I cried. In the following weeks and months I adjusted my diet, first with coconut oil then modified ketogenic. Recently I stopped the keto diet but now more conscious of carbs and sugar. I reduced CO to
Dx two years ago and at that time was not upset. In the first weeks that followed, as I researched, I cried. In the following weeks and months I adjusted my diet, first with coconut oil then modified ketogenic. Recently I stopped the keto diet but now more conscious of carbs and sugar. I reduced CO to
Hidden
in
Cure Parkinson's
10 years ago
Lupus and interstitial cystitis-crumbs it is painful
For many years, I have suffered from what were thought to be recurrent uti's but my recent bout ( 6 in 5 months) have all come back negative for infection I cannot describe how painful it can be at times, it really comes on quickly and feels like my insides are going to explode..... Other times, it
For many years, I have suffered from what were thought to be recurrent uti's but my recent bout ( 6 in 5 months) have all come back negative for infection I cannot describe how painful it can be at times, it really comes on quickly and feels like my insides are going to explode..... Other times, it
Chablis
in
LUPUS UK
10 years ago
Stalevo
I currently take Stalevo 125 5 times per day trying to avoid protein-rich meals as much as possible. I just worry about the other stuff alongside the levodopa - the 25mg cardopa and 200mg entacapone in every single tablet. I've experimented with Stalevo 100, 150 and 200 but when I tried 4 x 150 recently
I currently take Stalevo 125 5 times per day trying to avoid protein-rich meals as much as possible. I just worry about the other stuff alongside the levodopa - the 25mg cardopa and 200mg entacapone in every single tablet. I've experimented with Stalevo 100, 150 and 200 but when I tried 4 x 150 recently
John3419
in
Cure Parkinson's
10 years ago
Coconut Oil Recipes
I think it might be fun to gather everyone's ideas for making coconut oil an attractive part of the diet into one post. My hope is that this is a Recipe Post and not a place for strutting your stuff, , or debating about Angels on the head of a pin. Lighten Up; Have Fun! 0. Butter Substitute. At the
I think it might be fun to gather everyone's ideas for making coconut oil an attractive part of the diet into one post. My hope is that this is a Recipe Post and not a place for strutting your stuff, , or debating about Angels on the head of a pin. Lighten Up; Have Fun! 0. Butter Substitute. At the
fwes
in
Cure Parkinson's
10 years ago
Pain pain pain!!!!
Hi girls, Just need to talk to someone who knows what I'm going through and the pain... I am 2 weeks after surgery for a total hysterectomy and bowel resection I have to go back to the hospital next week to have my stents removed four of them. The thing is that I have an infection feel
Hi girls, Just need to talk to someone who knows what I'm going through and the pain... I am 2 weeks after surgery for a total hysterectomy and bowel resection I have to go back to the hospital next week to have my stents removed four of them. The thing is that I have an infection feel
Hidden
in
Endometriosis UK
10 years ago
Suddenly I have pain
Could any one please tell me if they have experienced sudden onset of severe lower back pain, was dx 12 years ago never had pain lots of other probs but no pain that changed 6weeks ago is it related to any meds ? I take Madapar,Comtan Amantadine and Azilect (which has proved very successful ) or is it
Could any one please tell me if they have experienced sudden onset of severe lower back pain, was dx 12 years ago never had pain lots of other probs but no pain that changed 6weeks ago is it related to any meds ? I take Madapar,Comtan Amantadine and Azilect (which has proved very successful ) or is it
Sunnysky
in
Cure Parkinson's
10 years ago
What I don't get is...
The meds that are supposed to help have the opposite effect! When I try any of these meds -- sinemet, amantidine, even neurontin -- the tremor, which is in my right arm/hand, spreads to my right leg, head and voice and speeds up too. I feel like I've gone from the "wash" cycle to the "spin" cycle! Have
The meds that are supposed to help have the opposite effect! When I try any of these meds -- sinemet, amantidine, even neurontin -- the tremor, which is in my right arm/hand, spreads to my right leg, head and voice and speeds up too. I feel like I've gone from the "wash" cycle to the "spin" cycle! Have
Beckey
in
Cure Parkinson's
10 years ago
amantadine
Hi all, Hope you are all hanging in there you wonderful people x My OH has been doing fine, well more than fine for the past 18months. He has been on Stavelo, and Azilect and Neuro patches but the Neuro wants to add amantadine. The reason is because he has started to throw out his arms mainly his right
Hi all, Hope you are all hanging in there you wonderful people x My OH has been doing fine, well more than fine for the past 18months. He has been on Stavelo, and Azilect and Neuro patches but the Neuro wants to add amantadine. The reason is because he has started to throw out his arms mainly his right
allofatremor
in
Cure Parkinson's
10 years ago
Bladder pain and endo?? One thing after another!! Help!!
Hey there, my name is Natalie and I have suffered with endo for about the past 6 years if not longer! I have a severely aggressive form(docs words not mine!) of endo! This year I had another laparoscopy to cut away big amounts of endo after a 2 year break, pain free!!! Since that laparoscopy everything
Hey there, my name is Natalie and I have suffered with endo for about the past 6 years if not longer! I have a severely aggressive form(docs words not mine!) of endo! This year I had another laparoscopy to cut away big amounts of endo after a 2 year break, pain free!!! Since that laparoscopy everything
Natalie732
in
Endometriosis UK
10 years ago
Azilect
Azilect I recommend you all try it within the first two days I had an amazing improvement in my symptoms "on"all day no "off" times at all tremor settled down cancelled my DBS surgery felt so good still having great results after using Azilect for 3 months little bit of Dyskenesia but manageable hope
Azilect I recommend you all try it within the first two days I had an amazing improvement in my symptoms "on"all day no "off" times at all tremor settled down cancelled my DBS surgery felt so good still having great results after using Azilect for 3 months little bit of Dyskenesia but manageable hope
Sunnysky
in
Cure Parkinson's
10 years ago
Urinary retention on gabapentin
Its only quite mild but its annoying as I've spent half the day going to the loo wanting to pee and it seems to take a lot of concentration to do it and then I can't always so when I get back in sitting room or whereever I feel mildly incomfortable and can't stop thinking about going to the loo again
Its only quite mild but its annoying as I've spent half the day going to the loo wanting to pee and it seems to take a lot of concentration to do it and then I can't always so when I get back in sitting room or whereever I feel mildly incomfortable and can't stop thinking about going to the loo again
Frankiebeee
in
Fibromyalgia Action UK
10 years ago
UTI miracle help
I had UTI constantly for years... My urologist suggested i take D-Mannose. I buy it from amazon, its a herbal miracle!!! I havent had another UTI or antibiotics for 2 yrs! Please read up on it! Im no doctor but it worked for me! Xx
I had UTI constantly for years... My urologist suggested i take D-Mannose. I buy it from amazon, its a herbal miracle!!! I havent had another UTI or antibiotics for 2 yrs! Please read up on it! Im no doctor but it worked for me! Xx
Hidden
in
LUPUS UK
10 years ago
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