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Experiences with
Primary ciliary dyskinesia (PCD)
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PCD - Do you also feel unusual fatigue and have arthritis symptoms?
My name is Silvia and I am writing on behalf of my sister who has born with Kartagener syndrome often associated to
Primary
Ciliary
Dyskinesia
. My sister is now 37 and in the last 5 years doctors have discovered a gene mutation and she has became more vulnerable to getting sick.
My name is Silvia and I am writing on behalf of my sister who has born with Kartagener syndrome often associated to
Primary
Ciliary
Dyskinesia
. My sister is now 37 and in the last 5 years doctors have discovered a gene mutation and she has became more vulnerable to getting sick.
Hidden
in
PCD Family Support Group (UK)
7 years ago
New Clinical Study regarding Mucuna Pruriens
New clinical study, 7-5-2017, with favorable results: http://www.neurology.org/content/early/2017/07/05/WNL.0000000000004175.full.pdf. file:///home/chronos/u-8b40ef9cb254ff0ea96c75f9b97bc580835e5dc1/Downloads/Cilia%20R.%20Mucuna%20in%20PD.%20Neurology%202017,%20432-438.pdf. Mucuna pruriens in Parkinson
New clinical study, 7-5-2017, with favorable results: http://www.neurology.org/content/early/2017/07/05/WNL.0000000000004175.full.pdf. file:///home/chronos/u-8b40ef9cb254ff0ea96c75f9b97bc580835e5dc1/Downloads/Cilia%20R.%20Mucuna%20in%20PD.%20Neurology%202017,%20432-438.pdf. Mucuna pruriens in Parkinson
karolmilk
in
Cure Parkinson's
7 years ago
The good fight
Today was the first day since I fell and broke my arm at the end of April that I have been able to do my usual 10 mile bike ride. It is so encouraging to be able to get back to biking and hiking and walking. Sure not easy though. This disease seems to take advantage of any opportunities to get a foothold
Today was the first day since I fell and broke my arm at the end of April that I have been able to do my usual 10 mile bike ride. It is so encouraging to be able to get back to biking and hiking and walking. Sure not easy though. This disease seems to take advantage of any opportunities to get a foothold
Enidah
in
Cure Parkinson's
7 years ago
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Pudendual nerve pain, interstitial cystitis and?
Hi everyone, I really need ur help as I am feeling desperate for answers and relief. 18 months ago I had extreme bladder and kidney infection . 9 plus antibiotics and almost 6 months later to clear. Extreme pain/pressure in vagina perineurium and rectum. Pain never cleared, has only gotten worse
Hi everyone, I really need ur help as I am feeling desperate for answers and relief. 18 months ago I had extreme bladder and kidney infection . 9 plus antibiotics and almost 6 months later to clear. Extreme pain/pressure in vagina perineurium and rectum. Pain never cleared, has only gotten worse
STUBBORNGIRL7368
in
Pelvic Pain Support Network
7 years ago
Pain
Am I the only one who when I have too much to drink, not alcohol, usually water, I get 'cystitis' pain even though I don't have an infection and I'm fine other times?
Am I the only one who when I have too much to drink, not alcohol, usually water, I get 'cystitis' pain even though I don't have an infection and I'm fine other times?
Looneytunes
in
Pelvic Pain Support Network
7 years ago
Anyone out there suffering with intersiastal cystitis?
Hi , I'm Jessie, I'm about to turn 34(😓) I have endometriosis (have had it seems forever) and I was recently diagnosed with intersiastal cystitis. It seems no one understands endometriosis and absolutely no one understands intersiastal cystitis . Anyone out there suffering with this ? I'm having my
Hi , I'm Jessie, I'm about to turn 34(😓) I have endometriosis (have had it seems forever) and I was recently diagnosed with intersiastal cystitis. It seems no one understands endometriosis and absolutely no one understands intersiastal cystitis . Anyone out there suffering with this ? I'm having my
Jcwy
in
Endometriosis UK
7 years ago
WEANING OFF STALEVO
Hi - I'm new here- diagnosed in 2006 and have been on Stalevo since 2006. Dr is trying to wean me off Stalevo. - I'm on day 4 and have become extremely weak - and also experiencing a burning ache in both legs. Has anyone else experienced similar. effects? Thanks!k
Hi - I'm new here- diagnosed in 2006 and have been on Stalevo since 2006. Dr is trying to wean me off Stalevo. - I'm on day 4 and have become extremely weak - and also experiencing a burning ache in both legs. Has anyone else experienced similar. effects? Thanks!k
Mcraeh
in
Cure Parkinson's
7 years ago
Need Advise
I take Senemet, 25-100, three times a day. I understand that the 100 stands for the mg of L-dopa in the prescription. I'm trying to substitute Macuna Purins for at least one of the Senemet daily. The Macuna I have says it is 15 mg per tab. Is there a way to calculate the amount of Macuna to take? Hopefully
I take Senemet, 25-100, three times a day. I understand that the 100 stands for the mg of L-dopa in the prescription. I'm trying to substitute Macuna Purins for at least one of the Senemet daily. The Macuna I have says it is 15 mg per tab. Is there a way to calculate the amount of Macuna to take? Hopefully
roncourtney
in
Cure Parkinson's
7 years ago
Sleeping problems
My husband has PD ( diagnosed in 2010) doing pretty well on meds prescribed by neuro docs...one thing though is sleeping problems...of course, at 80 he needs to get up for bathroom visits a few times a night...but getting back to sleep is a chore. He works many hours a week on physical jobs so lack of
My husband has PD ( diagnosed in 2010) doing pretty well on meds prescribed by neuro docs...one thing though is sleeping problems...of course, at 80 he needs to get up for bathroom visits a few times a night...but getting back to sleep is a chore. He works many hours a week on physical jobs so lack of
missybee
in
Cure Parkinson's
7 years ago
Mucuna Prereins
Hi I was diagnosed with PD seven years ago my neurologist has me on Sinemet100 mg tablet 3 to 4 times a day, sifrol er x 1 and Azilect x 1. Last week I started using mucuna prereins (MP) It's much more effective and lasts longer. I got my m/p from China and its 98% l dopa. I've stopped taking
Hi I was diagnosed with PD seven years ago my neurologist has me on Sinemet100 mg tablet 3 to 4 times a day, sifrol er x 1 and Azilect x 1. Last week I started using mucuna prereins (MP) It's much more effective and lasts longer. I got my m/p from China and its 98% l dopa. I've stopped taking
Lmji
in
Cure Parkinson's
7 years ago
Amantadine
Taking one in morn. One at lunch....was actually helping with hand tremor. Had to stop it..ankles started swelling. Anyone else take this?
Taking one in morn. One at lunch....was actually helping with hand tremor. Had to stop it..ankles started swelling. Anyone else take this?
Rosabellazita
in
Cure Parkinson's
7 years ago
Bacteria in urine after lap
Hi So i had my lap 17 days ago, nothing was found apart from my blood clots to quick but that not what im worried about... so i had painful urine after and burning nothing major some of the ladies mentioned cystitis relief sachets which i used and it all went away! On Monday went to dr to have stitches
Hi So i had my lap 17 days ago, nothing was found apart from my blood clots to quick but that not what im worried about... so i had painful urine after and burning nothing major some of the ladies mentioned cystitis relief sachets which i used and it all went away! On Monday went to dr to have stitches
Lulububs
in
Endometriosis UK
7 years ago
Blood in urine?
I am undiagnosed. I have an appointment at the end of August for Rheumatology. I have come up positive for RA but have not had the tests yet for Lupus specifically (it's only that RA doesn't explain my neurological problems and I have rashes - so I want testing for Lupus as well). My bladder is a problem
I am undiagnosed. I have an appointment at the end of August for Rheumatology. I have come up positive for RA but have not had the tests yet for Lupus specifically (it's only that RA doesn't explain my neurological problems and I have rashes - so I want testing for Lupus as well). My bladder is a problem
cheshcat
in
LUPUS UK
7 years ago
UTI's
Do any of you guys experience frequent UTI's? I seem to constantly have them and whenever the doctors test it, the results always say blood in the urine. Is this a symptom of endo?
Do any of you guys experience frequent UTI's? I seem to constantly have them and whenever the doctors test it, the results always say blood in the urine. Is this a symptom of endo?
staceymacg
in
Endometriosis UK
7 years ago
I sometimes get paralyzed and can't move
Hello everyone, I'm a 56 yo man who has been dxd since 2010. I'm on rytary 3 capsules 3x per day. Amantadine 2 100mg tabs 2x per day and ropinerole 1 2mg tablet 3x per day. The concoction works most of the time except in stressful situations. I do experience dystonia mainly in the morning along with
Hello everyone, I'm a 56 yo man who has been dxd since 2010. I'm on rytary 3 capsules 3x per day. Amantadine 2 100mg tabs 2x per day and ropinerole 1 2mg tablet 3x per day. The concoction works most of the time except in stressful situations. I do experience dystonia mainly in the morning along with
Sleeplessparki
in
Cure Parkinson's
7 years ago
Interstitial cystitis back with a vengeance
I suffered from interstitial cystitis for a horrible intense miserable year back in 2012 for the last four years I have been almost symptom free until a week ago when everything has returned with a vengeance. Any thoughts on how to get things back under control?
I suffered from interstitial cystitis for a horrible intense miserable year back in 2012 for the last four years I have been almost symptom free until a week ago when everything has returned with a vengeance. Any thoughts on how to get things back under control?
shelley1872
in
Pelvic Pain Support Network
7 years ago
Levothyroxine, Interstitial Cystitis & Cystitis
I am on 100mcgs of levothyroxine and suffer with interstitial cystitis and recurring cystitis. I believe levothyroxine is playing a huge role in contributing to the pain I suffer with cystitis. I stopped my levothyroxine for 1 day and the pain improved by 80%, but of course you start to feel very hypothyroid
I am on 100mcgs of levothyroxine and suffer with interstitial cystitis and recurring cystitis. I believe levothyroxine is playing a huge role in contributing to the pain I suffer with cystitis. I stopped my levothyroxine for 1 day and the pain improved by 80%, but of course you start to feel very hypothyroid
janeold25
in
Thyroid UK
7 years ago
Fungal inflection
I found my vagina was itching yesterday, and it burns when I pee. Maybe just cystitis? I went to boots bought some medicine today morning, not only the treatment for cystitis, but also the treatment for thrush inflection. Cos I found I also got the symptoms which is the vaginal discharge think and white
I found my vagina was itching yesterday, and it burns when I pee. Maybe just cystitis? I went to boots bought some medicine today morning, not only the treatment for cystitis, but also the treatment for thrush inflection. Cos I found I also got the symptoms which is the vaginal discharge think and white
AlisonShi
in
Women's Health
7 years ago
Diuretic effect on amantadine levels, hallucinations, falls
Taking Dyazide (hydrochlorothiazide and triamterene) while taking amantadine reduced renal clearance of amantadine and induced adverse effects including hallucinations (1, cited in 2). Some medications increase orthostatic hypotension and are associated with a higher rate of
Taking Dyazide (hydrochlorothiazide and triamterene) while taking amantadine reduced renal clearance of amantadine and induced adverse effects including hallucinations (1, cited in 2). Some medications increase orthostatic hypotension and are associated with a higher rate of
aspergerian
in
Cure Parkinson's
7 years ago
anyone taking azilect with mucuna?
my father has PD he is on azilect 1mg/d with litte effect, so i want to try mucuna i read many comments that says not to combine azilect & mucuna as it can cause high Blood pressure i don't know why? although azilect is usaually given with levodopa, and mucuna is just a natural levodopa, so why its ok
my father has PD he is on azilect 1mg/d with litte effect, so i want to try mucuna i read many comments that says not to combine azilect & mucuna as it can cause high Blood pressure i don't know why? although azilect is usaually given with levodopa, and mucuna is just a natural levodopa, so why its ok
mmsm
in
Cure Parkinson's
7 years ago
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