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Experiences with
Primary ciliary dyskinesia (PCD)
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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
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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
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
9 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
9 years ago
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
9 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
9 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
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