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Experiences with
Primary ciliary dyskinesia (PCD)
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Interstitial cystitis and levator ani
Can someone plse help, I've gone from bad to worse. 5 surgeries for endo, the last one was a success bcuz prior docs weren't skilled. 2 months ago i got inflammed out of the blue, sent me to my gyno who said i might have cancer or need a bowel resection due to endo.He scarred me so i went to the cancer
Can someone plse help, I've gone from bad to worse. 5 surgeries for endo, the last one was a success bcuz prior docs weren't skilled. 2 months ago i got inflammed out of the blue, sent me to my gyno who said i might have cancer or need a bowel resection due to endo.He scarred me so i went to the cancer
seraphina
in
Endometriosis UK
8 years ago
Interstitial Cystitis
Hi. I have been suffering from intense pelvis pain and have an urgency to pee which when the bladder is full it can be painful to pass the urine and after having passed urine the painful pressure is slightly relived. I also needed to get up 2/3 times a night. I have gone under many test with my
Hi. I have been suffering from intense pelvis pain and have an urgency to pee which when the bladder is full it can be painful to pass the urine and after having passed urine the painful pressure is slightly relived. I also needed to get up 2/3 times a night. I have gone under many test with my
Sedgie99
in
Pelvic Pain Support Network
8 years ago
Dyskinesia Webinar
Our January webinar will focus on dyskinesia, involuntary movements that arise with levodopa use as Parkinson's progresses. Our panelists will discuss the current management of dyskinesia and new therapies in development. Register today: https://www.michaeljfox.org/understanding-parkinsons/webinar-registration.php
Our January webinar will focus on dyskinesia, involuntary movements that arise with levodopa use as Parkinson's progresses. Our panelists will discuss the current management of dyskinesia and new therapies in development. Register today: https://www.michaeljfox.org/understanding-parkinsons/webinar-registration.php
Hidden
in
Cure Parkinson's
8 years ago
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Genetic research into rare lung conditions
The research is looking at some of the less common lung conditions (they’re looking for people with non-CF bronchiectasis, interstitial lung disease, vascular lung disease and
primary
ciliary
dyskinesia
in particular). Also there are centres taking part all over the country.
The research is looking at some of the less common lung conditions (they’re looking for people with non-CF bronchiectasis, interstitial lung disease, vascular lung disease and
primary
ciliary
dyskinesia
in particular). Also there are centres taking part all over the country.
BethanyBateman
in
Lung Conditions Community Forum
8 years ago
Doctors and late results
Hi everyone I have been very unwell since the begining of nov,after asking my doctor to admit me in to hospital because I had server abdominal pain,,server diarrhea and I was vomiting a black substance back.he refused..I was eventually rushed in to hospital several hours later by a locum..I was diagnosed
Hi everyone I have been very unwell since the begining of nov,after asking my doctor to admit me in to hospital because I had server abdominal pain,,server diarrhea and I was vomiting a black substance back.he refused..I was eventually rushed in to hospital several hours later by a locum..I was diagnosed
birkie
in
Thyroid UK
8 years ago
Levodopa Equivalent Dose App
Many of us take a complicated mixture of different types of Parkinson's drugs, with different doses, at different times. The concept of LED (levodopa equivalent dose) gives a rough way to compare two medication regimes. For instance, 8mg of ropinirole has, very roughly, about the same effect as 160mg
Many of us take a complicated mixture of different types of Parkinson's drugs, with different doses, at different times. The concept of LED (levodopa equivalent dose) gives a rough way to compare two medication regimes. For instance, 8mg of ropinirole has, very roughly, about the same effect as 160mg
johntPM
in
Cure Parkinson's
8 years ago
Interstitial cystitis
I had a cystoscope done at the Urologist's office today and it was normal. Is that enough to rule out IC or do I need a cystoscope with hydrodistention to rule it out? I have also tried a few different meds for OAB, which only had minimal effect. Thanks in advance!
I had a cystoscope done at the Urologist's office today and it was normal. Is that enough to rule out IC or do I need a cystoscope with hydrodistention to rule it out? I have also tried a few different meds for OAB, which only had minimal effect. Thanks in advance!
Zelda5
in
Endometriosis UK
8 years ago
Trace blood in urine??
Hi I had my pre op on Friday and they done a urine test she said there was a trace of blood but no infection. For the last year or so I have had about 6 urine tests and they have all had a trace of blood. The samples were sent to be checked and came back clear with no problems. The dr said to follow
Hi I had my pre op on Friday and they done a urine test she said there was a trace of blood but no infection. For the last year or so I have had about 6 urine tests and they have all had a trace of blood. The samples were sent to be checked and came back clear with no problems. The dr said to follow
Mummycox33
in
Endometriosis UK
8 years ago
Spinal stonesis
I was diagnosed with Parkinson's about 17 months ago. My main problem is my balance. I do have tremors occasionally. I recently went to a new neurologist and he told me my balance issue is caused by spinal stenosis . Has anyone' in this group been diagnosed with that also.? I take Mirapex, Sinemet and
I was diagnosed with Parkinson's about 17 months ago. My main problem is my balance. I do have tremors occasionally. I recently went to a new neurologist and he told me my balance issue is caused by spinal stenosis . Has anyone' in this group been diagnosed with that also.? I take Mirapex, Sinemet and
tobykeith
in
Cure Parkinson's
9 years ago
Anyone else been diagnosed with cystitis cystica? Many years of suffering.....
I've suffered with a bladder prone to infection since I was approx 7. Symptoms have varied as has intensity of the years of the pain in my bladder. Many cystoscopies, urethral dilatations later, I am still looking for ways to help me to manage symptoms. I am now post menopausal. Menopause was not a walk
I've suffered with a bladder prone to infection since I was approx 7. Symptoms have varied as has intensity of the years of the pain in my bladder. Many cystoscopies, urethral dilatations later, I am still looking for ways to help me to manage symptoms. I am now post menopausal. Menopause was not a walk
25clai
in
Pelvic Pain Support Network
9 years ago
Never ending
Dont even know where to start. Ive had 2 laps the last one in March this year under a fab endo specialist. He removed most my endo apart from a small amount on my bowel. He did remove lots from my bowel, bladder, pelvic wall, basically everywhere apart from my ovaries and fallopian tubes and with that
Dont even know where to start. Ive had 2 laps the last one in March this year under a fab endo specialist. He removed most my endo apart from a small amount on my bowel. He did remove lots from my bowel, bladder, pelvic wall, basically everywhere apart from my ovaries and fallopian tubes and with that
emmaibiza
in
Endometriosis UK
9 years ago
Hiprex (methenamine - oral, Mandelamine, UrexHexamethylenetetramine): anyone?
My consultant urologist tells me hiprex is our fall-back treatment re the way we're managing the chronic issues involved in my various chronic urological/renal conditions. Nearly a year into finally tackling these lifelong problems in a more concerted manner, the treatment plan immunology+rheumatology
My consultant urologist tells me hiprex is our fall-back treatment re the way we're managing the chronic issues involved in my various chronic urological/renal conditions. Nearly a year into finally tackling these lifelong problems in a more concerted manner, the treatment plan immunology+rheumatology
Barnclown
in
LUPUS UK
9 years ago
Hello :)
Hello all, i haven't introduced myself yet- I'm a 23yr old female who got diagnosed with
Primary
ciliary
dyskinesia
at age 6. Other conditions such as asthma bronchiectasis and sinusitis- Have had several flare ups and pneumonia within the last few years.
Hello all, i haven't introduced myself yet- I'm a 23yr old female who got diagnosed with
Primary
ciliary
dyskinesia
at age 6. Other conditions such as asthma bronchiectasis and sinusitis- Have had several flare ups and pneumonia within the last few years.
ostarlight55
in
Lung Conditions Community Forum
9 years ago
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
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
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