Search
Search
About
Log in
Join
Experiences with
Primary ciliary dyskinesia (PCD)
Posts
Communities
741 public posts
Filter results
There has to be stuff out there.....
Hello All, I am an advocate of my father who has PSP. I have been reading everything that I have found in relation to PSP. He has done a couple of clinical trials. One with CoQ10 and one with TPI-287. Neither seemed to have much effect, but as you know its hard to tell because he has good days and
Hello All, I am an advocate of my father who has PSP. I have been reading everything that I have found in relation to PSP. He has done a couple of clinical trials. One with CoQ10 and one with TPI-287. Neither seemed to have much effect, but as you know its hard to tell because he has good days and
mattgo
in
PSP Association
9 years ago
I am petrified of the bladder biopsy I am about to have..... Can anyone help?
I have been suffering with persistent abdominal pain which has in the past been treated as a uti but in January I managed to see a urologist who upon listening to my tail of woe agreed with me and suggested that I had developed interstitial cystitis. In order to be 100% sure about this, they want me
I have been suffering with persistent abdominal pain which has in the past been treated as a uti but in January I managed to see a urologist who upon listening to my tail of woe agreed with me and suggested that I had developed interstitial cystitis. In order to be 100% sure about this, they want me
Chablis
in
Thyroid UK
9 years ago
"Dilemma "Increase meds or take more often? Please help
Hi fellow sufferers of PD I have reached a stage in my journey where I am getting a lot of OFF times . I was scheduled for DBS in December last year but 2 weeks before that I started on Azilect with fantastic results i was almost symptom free and cancelled my surgery ( was also taking Madapar Comtan
Hi fellow sufferers of PD I have reached a stage in my journey where I am getting a lot of OFF times . I was scheduled for DBS in December last year but 2 weeks before that I started on Azilect with fantastic results i was almost symptom free and cancelled my surgery ( was also taking Madapar Comtan
Sunnysky
in
Cure Parkinson's
9 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Levothyroxine and Interstitial cystitis
Not sure if anyone can help me but is there anyone else who has interstitial cystitis and also an underactive thyroid? I am after some advice. I was diagnosed with IC five years ago and get flare ups now and again but my recent flare up was the beginning of March and I am still living with an agitated
Not sure if anyone can help me but is there anyone else who has interstitial cystitis and also an underactive thyroid? I am after some advice. I was diagnosed with IC five years ago and get flare ups now and again but my recent flare up was the beginning of March and I am still living with an agitated
Philly2748
in
Thyroid UK
9 years ago
Increasing Saliva in my mouth and keep wanting to clear my throat.
Hello everyone, I noticed that in the last few weeks my mom keeps wanting to clear her throat, and she said that she feels that there is a lot of Saliva accumulating in her mouth. recently she stopped Amantadine for 2 weeks, but she started Amantadine back again 6 days ago. (which I think it might help
Hello everyone, I noticed that in the last few weeks my mom keeps wanting to clear her throat, and she said that she feels that there is a lot of Saliva accumulating in her mouth. recently she stopped Amantadine for 2 weeks, but she started Amantadine back again 6 days ago. (which I think it might help
leelit
in
Cure Parkinson's
9 years ago
Night Terror and Vivid dreams
Hello, My Mom is 70 yo and she has parkinson for 15 years, she is currently taking Amantadine 2/day, selegelin 2/day, mirapex 3/day and trihexyphenidyl 1/day. She has Night Terros every night for the past few years and she is getting worse, she talks, screams and fights during the night, My dad can
Hello, My Mom is 70 yo and she has parkinson for 15 years, she is currently taking Amantadine 2/day, selegelin 2/day, mirapex 3/day and trihexyphenidyl 1/day. She has Night Terros every night for the past few years and she is getting worse, she talks, screams and fights during the night, My dad can
leelit
in
Cure Parkinson's
9 years ago
L-Dopa or Azilect (rasagiline) positively affecting mental states?
Has anyone tried going off L-DOPA (or carbidopa) or Azilect (rasagiline) and noticed a change in thinking such as being more critical of people or more easily irritated?
Has anyone tried going off L-DOPA (or carbidopa) or Azilect (rasagiline) and noticed a change in thinking such as being more critical of people or more easily irritated?
zawy
in
Cure Parkinson's
9 years ago
livido reticularis
Hi there. I am experiencing some kind of flare of vasculitis. Was diagnosed and treated for CNSV. I have developed libidos reticularis and get it over my entire body in heat such as steam bath and tub. I have looked it up and it can scary - thrombosis,ulcers etc. would anyone share their knowledge about
Hi there. I am experiencing some kind of flare of vasculitis. Was diagnosed and treated for CNSV. I have developed libidos reticularis and get it over my entire body in heat such as steam bath and tub. I have looked it up and it can scary - thrombosis,ulcers etc. would anyone share their knowledge about
Kat13
in
Hughes Syndrome APS Forum
9 years ago
Endo on bladder and cystoscopy hydrodistention yesterday
Hi girls Hope you are all as well as can be. I had my second lap in march and my gynae con removed endo from everywhere apart from my ovaries. I had endometriosis on bowel and outside of bladder all of which was removed. I had bladder symptoms also, blood in urine, burning when urinating but no infection
Hi girls Hope you are all as well as can be. I had my second lap in march and my gynae con removed endo from everywhere apart from my ovaries. I had endometriosis on bowel and outside of bladder all of which was removed. I had bladder symptoms also, blood in urine, burning when urinating but no infection
emmaibiza
in
Endometriosis UK
9 years ago
Fourth lap, 25 years old, stage 4 endo, interstitial cystitis and adeno.. Mental hugs needed!
Hello ladies, I have just turned 25 and have just had my fourth lap which showed that my endo has gone from a stage 3 to stage 4 and has started to really affect my bowel. I am now being scheduled for a much bigger lap which will include having part of my bowel removed. I also have interstitial cystitis
Hello ladies, I have just turned 25 and have just had my fourth lap which showed that my endo has gone from a stage 3 to stage 4 and has started to really affect my bowel. I am now being scheduled for a much bigger lap which will include having part of my bowel removed. I also have interstitial cystitis
Catness
in
Endometriosis UK
9 years ago
UTI's...related??
UTI's.....constantly getting them...related?? Anyone suffering with it too? Just had my pre op found out I have another urine infection been put on antibiotics and still having my lap on Friday x
UTI's.....constantly getting them...related?? Anyone suffering with it too? Just had my pre op found out I have another urine infection been put on antibiotics and still having my lap on Friday x
littlelostjess
in
Endometriosis UK
9 years ago
Ovarian Cysts & Bladder Urachal Remnant/Lesion
I had a Cystoscopy (camera inside bladder) in March 2015 to check for bladder lesions because of microscopic hematuria (microscopic blood in urine). The procedure didn't cause any pain during or afterwards -The Urologist applied a Anesthetic Gel to numb the urethra . I also had a CT scan with contrast
I had a Cystoscopy (camera inside bladder) in March 2015 to check for bladder lesions because of microscopic hematuria (microscopic blood in urine). The procedure didn't cause any pain during or afterwards -The Urologist applied a Anesthetic Gel to numb the urethra . I also had a CT scan with contrast
GirlTalk
in
Women's Health
9 years ago
IM SURPRISED THAT SOMEONE ELSE H MSA ,I THINK IT'S FAR WORSE THAN ANY OF THE OTHER COUSINS....................
THANKS JB.........., FOR SGGESTING AMANTADINE, ONCE I TOOK & H AD HALUSINATIONS. HOW DO YOU USE CINNAMEN ? MY DR TOLD ME THAT PAPAYA IS GOOD IT HELPS W/ DIGESTION & LOT'S OF GOOD INGREDIENTS . I 'M NEW AT THIS.............. MSA SO ....... ANYONE THAT HAS ANY SUGGESTIONS ON HOW TO COPE
THANKS JB.........., FOR SGGESTING AMANTADINE, ONCE I TOOK & H AD HALUSINATIONS. HOW DO YOU USE CINNAMEN ? MY DR TOLD ME THAT PAPAYA IS GOOD IT HELPS W/ DIGESTION & LOT'S OF GOOD INGREDIENTS . I 'M NEW AT THIS.............. MSA SO ....... ANYONE THAT HAS ANY SUGGESTIONS ON HOW TO COPE
GenaBenedict
in
PSP Association
9 years ago
Dyskinesia
Hi everybody ...I am now aged 70, diagnosed at 59. For the last 4 years I've taken Stalevo 125 at 0700,1000,1300,1600 and 1900. Also take Requip XL - 6mg with the 0700 dose and 4mg with the 1900 dose. I'm pretty active, walk 30 mins on treadmill ok. But I get constant dyskinesia - writhing of the head
Hi everybody ...I am now aged 70, diagnosed at 59. For the last 4 years I've taken Stalevo 125 at 0700,1000,1300,1600 and 1900. Also take Requip XL - 6mg with the 0700 dose and 4mg with the 1900 dose. I'm pretty active, walk 30 mins on treadmill ok. But I get constant dyskinesia - writhing of the head
John3419
in
Cure Parkinson's
9 years ago
UTI what antibotics to avoid
I have a UTI I will be seeing doc this morning. Please can you tell me what antibotics to avoid. Thanks
I have a UTI I will be seeing doc this morning. Please can you tell me what antibotics to avoid. Thanks
Mauds
in
Thyroid UK
9 years ago
Endo and intitstal cystitis
Just wondering if anyone else has been diagnosed with intitstal cystitis? My gynae consultant found this when he removed endo from my bladder. I have a appointment with a urologist next week for a urethra procedure, not sure I'm ready for another procedure I only had my lap 4 and a half weeks ago.
Just wondering if anyone else has been diagnosed with intitstal cystitis? My gynae consultant found this when he removed endo from my bladder. I have a appointment with a urologist next week for a urethra procedure, not sure I'm ready for another procedure I only had my lap 4 and a half weeks ago.
emmaibiza
in
Endometriosis UK
9 years ago
Little Imaginary Friends
My husband is taking Stalevo 200 mg a day and with second dose takes Azilect 1 mg.He has gone from being relatively stable to having our home taken over by the little things he sees everywhere from a family to a dog unde r the bed.At night his dreams are so horrid he wakes up screaming loud enough to
My husband is taking Stalevo 200 mg a day and with second dose takes Azilect 1 mg.He has gone from being relatively stable to having our home taken over by the little things he sees everywhere from a family to a dog unde r the bed.At night his dreams are so horrid he wakes up screaming loud enough to
bartogirl
in
Cure Parkinson's
9 years ago
Mucuna Purens as a source of dopamine
I am seriously contemplating mucuna purens for my P D--==PROBABLY CONTRARY TO MY NEURO'S ADVICE. Has anyone used M P successfully and at what doses.? Now I take sinemet , azilect, and comtan. I would appreciate any advice or suggestions or warnings,etc.
I am seriously contemplating mucuna purens for my P D--==PROBABLY CONTRARY TO MY NEURO'S ADVICE. Has anyone used M P successfully and at what doses.? Now I take sinemet , azilect, and comtan. I would appreciate any advice or suggestions or warnings,etc.
rustjudge
in
Cure Parkinson's
9 years ago
Chronic bladder & urinary pain 😭
Hello everyone :( long post incoming. Not having the best time the past couple of days. So I've got my cystoscopy a week today but the past few days bladder and wee-ing wise have been absolutely chronic. Just another level of pain and discomfort. My bladder is literally throbbing and aching- like
Hello everyone :( long post incoming. Not having the best time the past couple of days. So I've got my cystoscopy a week today but the past few days bladder and wee-ing wise have been absolutely chronic. Just another level of pain and discomfort. My bladder is literally throbbing and aching- like
avelvetcrowbar
in
Endometriosis UK
9 years ago
PAGF
HI all I have been diagnosed with this wierd problem (pure akinesia gaite freezing) after first being dx'd with Parkinsons then PSP. I am on 100 mg of Amantadine 4 times a day. Does anyone else have this problem and how do you cope?
HI all I have been diagnosed with this wierd problem (pure akinesia gaite freezing) after first being dx'd with Parkinsons then PSP. I am on 100 mg of Amantadine 4 times a day. Does anyone else have this problem and how do you cope?
Ken_Butler
in
Cure Parkinson's
9 years ago
1
...
29
30
31
...
38
Next page
10
20
30
Filter results
Clear filters
Posted in
All communities
Cure Parkinson's
487 results
Endometriosis UK
78 results
Thyroid UK
34 results
View top 10 communities
Sort by
Most Relevant
Newest