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Experiences with
Primary ciliary dyskinesia (PCD)
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Hysterectomy & Bladder Hydrodistention w/cytoscopy
I have stage 2 Endometriosis and have been having a lot of urinary frequency with pain and the Dr. thinks that I probably have Interstitial Cystitis, as they occur in 2/3rds of those with Endo. He also mentioned it being Endo's evil twin, lol. Anyway, I'm scheduled for a hysterectomy and hydro/cytoscopy
I have stage 2 Endometriosis and have been having a lot of urinary frequency with pain and the Dr. thinks that I probably have Interstitial Cystitis, as they occur in 2/3rds of those with Endo. He also mentioned it being Endo's evil twin, lol. Anyway, I'm scheduled for a hysterectomy and hydro/cytoscopy
Zelda5
in
Endometriosis UK
8 years ago
Is atelectasis a common problem with people who have bronchiectasis and have primary ciliary dyskinesia?
I was told by my doctor that I had atelectasis which was observed on a chest x-ray located in the area where I had past pneumonia when I was pregnant with my daughter. I don't know what this means to my health or the treatment for atelectasis or if atelectasis is a permeant thing for me now. I will
I was told by my doctor that I had atelectasis which was observed on a chest x-ray located in the area where I had past pneumonia when I was pregnant with my daughter. I don't know what this means to my health or the treatment for atelectasis or if atelectasis is a permeant thing for me now. I will
fcfilice
in
PCD Family Support Group (UK)
8 years ago
UTI post laparoscopy?
Hi, just wondering if anyone else developed a UTI following their laparoscopy? My lap was last Monday and I've been having issues since then. I constantly feel like I need to wee and I'm getting a lot of pressure & burning. I've tried cystitis sachets but just been to the chemist who told ne I really
Hi, just wondering if anyone else developed a UTI following their laparoscopy? My lap was last Monday and I've been having issues since then. I constantly feel like I need to wee and I'm getting a lot of pressure & burning. I've tried cystitis sachets but just been to the chemist who told ne I really
LSF1982
in
Endometriosis UK
8 years ago
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Interstitial Cystitis
Hello, Last I was on here was complaining about having Hives,. They did eventually clear up with short course of prednisone. I have since seen dermatologist for a get to know meeting. She said that she was familiar with hives affecting Lupus patients in a more aggressive manner than the norm, after
Hello, Last I was on here was complaining about having Hives,. They did eventually clear up with short course of prednisone. I have since seen dermatologist for a get to know meeting. She said that she was familiar with hives affecting Lupus patients in a more aggressive manner than the norm, after
Chapter
in
LUPUS UK
8 years ago
self medicating since i was 10
I have been self medicating with Sinemet ..then madopar etc since i was ten and i never take my meds at the same time each day ( apart from my first dose in the morning ) as my meds never seem to last for a definitive amount of time. Some times they stack up in my system as they dont appear to be working
I have been self medicating with Sinemet ..then madopar etc since i was ten and i never take my meds at the same time each day ( apart from my first dose in the morning ) as my meds never seem to last for a definitive amount of time. Some times they stack up in my system as they dont appear to be working
Bionicmatt
in
Cure Parkinson's
8 years ago
Its emotional...
Ever since I had DBS back in 2006 my emotions appear to have become much more polarised . Fortunately the vast majority of the time I am happy and smiley but I can start crying at a tv show / film / song or just something i am thinking about like never before in an instant and if something upsets
Ever since I had DBS back in 2006 my emotions appear to have become much more polarised . Fortunately the vast majority of the time I am happy and smiley but I can start crying at a tv show / film / song or just something i am thinking about like never before in an instant and if something upsets
Bionicmatt
in
Cure Parkinson's
8 years ago
Pramipexole
My Experience: After 2 months taking 0.18 miligram of Pramipexole 3 times daily + Amantadine 100, 3 times daily and levodopa/carbi 100/10 every 3 hours I had horrible dreams at night, felt bad sore in my eyes, too much sensitive to light even I wasn't able to look at my laptop's monitor with low light
My Experience: After 2 months taking 0.18 miligram of Pramipexole 3 times daily + Amantadine 100, 3 times daily and levodopa/carbi 100/10 every 3 hours I had horrible dreams at night, felt bad sore in my eyes, too much sensitive to light even I wasn't able to look at my laptop's monitor with low light
saf2825
in
Cure Parkinson's
8 years ago
Blood in urine with pelvic pain
I've had blood in my urine for a couple of weeks now accompanied by pelvic pain and vaginal pain. Bladde and kidney scan was clear but now being referred to urologist. Anyone had this before. I am 39 female. I had a one day episode of cystitis before this but no infection was found in the urine
I've had blood in my urine for a couple of weeks now accompanied by pelvic pain and vaginal pain. Bladde and kidney scan was clear but now being referred to urologist. Anyone had this before. I am 39 female. I had a one day episode of cystitis before this but no infection was found in the urine
Catherine2020
in
Pelvic Pain Support Network
8 years ago
An alternative to Madopar and Sinemet?
I have now been on 'L' Dopa therapy either Madopar (29 years and counting ) Sinemet (10 years from the age of 9 to 19 ) is there an alternative on the market and will i be able to come off the drugs at all?
I have now been on 'L' Dopa therapy either Madopar (29 years and counting ) Sinemet (10 years from the age of 9 to 19 ) is there an alternative on the market and will i be able to come off the drugs at all?
Bionicmatt
in
Cure Parkinson's
8 years ago
Seeking Comments From those combining Mucuna Pruriens (MC) with their Sinemet (C/L)
When combining MC w/C/L how does that seem to work best for you? I believe there must be a better way than I have done so far. I have taken them at the same time and independently and one awhile before the other in both directions. I've taken MP with water, juice, hot pineapple juice as a hot beverage
When combining MC w/C/L how does that seem to work best for you? I believe there must be a better way than I have done so far. I have taken them at the same time and independently and one awhile before the other in both directions. I've taken MP with water, juice, hot pineapple juice as a hot beverage
BUZZ1397
in
Cure Parkinson's
8 years ago
Ingesting potentially toxic non-foods as a toddler a pre- cursor for developing Juvenile On-set Parkinson's
As a toddler I used to get up to all sorts of mischief apparently and was forever putting strange things in my mouth and then proceeding to ingest them. The list includes eating soil and sand ,drinking some brake fluid I found , licking a paint brush clean of emulsion paint and sucking the pink phosphorus
As a toddler I used to get up to all sorts of mischief apparently and was forever putting strange things in my mouth and then proceeding to ingest them. The list includes eating soil and sand ,drinking some brake fluid I found , licking a paint brush clean of emulsion paint and sucking the pink phosphorus
Bionicmatt
in
Cure Parkinson's
8 years ago
Parkinsons drugs
Changed from Modopar to Stalevo noticed that i am suffering with more Dyskinesia, is this Stalevo and can I go back to Modopar. Meeting my consultant next week, would like to have a few of your opinions please
Changed from Modopar to Stalevo noticed that i am suffering with more Dyskinesia, is this Stalevo and can I go back to Modopar. Meeting my consultant next week, would like to have a few of your opinions please
charlton
in
Cure Parkinson's
8 years ago
UTI
Hi, does anyone else suffer with recurrent UTI's and is this a symptom of fibro? I seem to have terrible bouts of urine infections that constantly come back. Is this part of fibro because it's doing my head in!!!!
Hi, does anyone else suffer with recurrent UTI's and is this a symptom of fibro? I seem to have terrible bouts of urine infections that constantly come back. Is this part of fibro because it's doing my head in!!!!
Char_Green95
in
Fibromyalgia Action UK
8 years ago
Update on high b/p azilect and theanine in Gabba-Plex
About 3 months ago I was struggling to manage elevated b/p and to continue to take a Rx of Azilect and also to continue to take otc Gabba-Plex. Briefly, the history is that theanine in the Gabba-Plex increased the elevation of my b/p a common side-effect to Azilect. The update is that by taking just
About 3 months ago I was struggling to manage elevated b/p and to continue to take a Rx of Azilect and also to continue to take otc Gabba-Plex. Briefly, the history is that theanine in the Gabba-Plex increased the elevation of my b/p a common side-effect to Azilect. The update is that by taking just
BUZZ1397
in
Cure Parkinson's
8 years ago
Left sided pd
I have been diagnosed for 10 yrs My pd is on my left side I have no Tremor but suffer from extreme left foot pain, dyskinesia in my left leg & contestant freezing gait so bad it is impossible to go out on my own Does anyone else have pd only on one side?
I have been diagnosed for 10 yrs My pd is on my left side I have no Tremor but suffer from extreme left foot pain, dyskinesia in my left leg & contestant freezing gait so bad it is impossible to go out on my own Does anyone else have pd only on one side?
Maxkas
in
Cure Parkinson's
8 years ago
Gene Therapy
The link to the study is below: https://www.action.org.uk/our-research/
primary
-
ciliary
-
dyskinesia
-tackling-underlying-cause-debilitating-rare-condition Another gene therapy clinical trial has been performed here: https://ciliajournal.biomedcentral.com/articles/10.1186/2046-2530-1-S1-P109
The link to the study is below: https://www.action.org.uk/our-research/
primary
-
ciliary
-
dyskinesia
-tackling-underlying-cause-debilitating-rare-condition Another gene therapy clinical trial has been performed here: https://ciliajournal.biomedcentral.com/articles/10.1186/2046-2530-1-S1-P109
Karlo
in
PCD Family Support Group (UK)
8 years ago
Anyone tried botox, trigger point injections or some Interstitial cystitis treatment in London or anywhere in Europe?
Hello, is here anyone who has pelvic floor dysfunction and/or INterstitial Cystitis and was treated by any good gynecologist or urologyst in London or anywhere in Europe? Pls recommend. I need help asap! Thank you!
Hello, is here anyone who has pelvic floor dysfunction and/or INterstitial Cystitis and was treated by any good gynecologist or urologyst in London or anywhere in Europe? Pls recommend. I need help asap! Thank you!
Zenica2014
in
Pelvic Pain Support Network
8 years ago
Endo, polysistic ovaries and Interstitial cystitis
I've just come out of my lap and I'm heartbroken. First off they refused to dress my wounds and then the doctor came in and told me to stop crying because people have it a lot worse. He found two pouches of endo that he removed and I have a lot of endo over my womb that he didn't remove. I also have
I've just come out of my lap and I'm heartbroken. First off they refused to dress my wounds and then the doctor came in and told me to stop crying because people have it a lot worse. He found two pouches of endo that he removed and I have a lot of endo over my womb that he didn't remove. I also have
Hdhskdhdhdh
in
Endometriosis UK
8 years ago
Pcd and cystic fybrosis
Hi is it possible that my child could have pcd and cystic fibroses becouse his doctor did genetic tests on him and this is what she said is the results. " His results are positive for
primary
ciliary
dyskinesia
, the cystic fibrosis studies are inconclusive and I have asked the geneticist to look at the
Hi is it possible that my child could have pcd and cystic fibroses becouse his doctor did genetic tests on him and this is what she said is the results. " His results are positive for
primary
ciliary
dyskinesia
, the cystic fibrosis studies are inconclusive and I have asked the geneticist to look at the
Chrisjudy
in
PCD Family Support Group (UK)
8 years ago
Pramipexole (Mirapex) appear to have neuroprotective and neurorestorative properties
This study (Dopamine D3 receptor agonists for protection and repair in Parkinson's disease). goes on to say that Mirapex has a neuroprotective and neurorestorative effect. From what I read on this forum Mirapex has a lot of side effects and is nearly impossible to get off of. I am amazed it has the
This study (Dopamine D3 receptor agonists for protection and repair in Parkinson's disease). goes on to say that Mirapex has a neuroprotective and neurorestorative effect. From what I read on this forum Mirapex has a lot of side effects and is nearly impossible to get off of. I am amazed it has the
rhenry45
in
Cure Parkinson's
8 years ago
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