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Experiences with
Primary ciliary dyskinesia (PCD)
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What causes the involuntary movements or dyskinesia, is it the pd or pd meds?
If it's the meds, which ones are most likely to cause these symptoms? I take 0.5mg of Ropinirole 4x dly., 100mg of Carb/Levo 4x dly., 100mg of Buprop 2x dly. (which I believe is the generic form of Wellbutrin) and 100mg of Comtan 2x dly.. However my Comtan was recently changed to a generic form by the
If it's the meds, which ones are most likely to cause these symptoms? I take 0.5mg of Ropinirole 4x dly., 100mg of Carb/Levo 4x dly., 100mg of Buprop 2x dly. (which I believe is the generic form of Wellbutrin) and 100mg of Comtan 2x dly.. However my Comtan was recently changed to a generic form by the
Sedona
in
Cure Parkinson's
11 years ago
Sinemet.. on and off
Sinemet on means dyskenesia and freezing.Sinemet off time means bradykenesia and tremors.. dont know which is the lesser of 2 evils...
Sinemet on means dyskenesia and freezing.Sinemet off time means bradykenesia and tremors.. dont know which is the lesser of 2 evils...
ivyanne
in
Cure Parkinson's
11 years ago
Head movement associated with Levodopa
My husband has been using Ropinirole for 5 years now but the doctor has reduced this and added Levodopa. I have noticed a big change in his physical movements. His head is moving side to side and he has a tendency of walking with his head cocked to one side. We just finished a 10 day trip with friends
My husband has been using Ropinirole for 5 years now but the doctor has reduced this and added Levodopa. I have noticed a big change in his physical movements. His head is moving side to side and he has a tendency of walking with his head cocked to one side. We just finished a 10 day trip with friends
DGrif
in
Cure Parkinson's
11 years ago
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After over ten years only cardopa- leva dopa in extended release plus short acting doses are doing some good. Any good ideas for rigidity?
Comtan, amantadine, mirapex, azilect psych/ side effects now terrifying. Lower body rigiidity is challenging mobility without a wheelchair.
Comtan, amantadine, mirapex, azilect psych/ side effects now terrifying. Lower body rigiidity is challenging mobility without a wheelchair.
VeryBlue
in
Cure Parkinson's
11 years ago
Irritable Bladder or Intercystial Cystitis
Does anyone get an Irritable bladder? With no ability to hold it in despite fairly good pelvic muscles. It burns and I am back and forwards to the loo five minutes after I've just been. It also hurts in my abdomen and kidneys. Consultant says its irritable bladder or Intercystial cystitis. Anyone
Does anyone get an Irritable bladder? With no ability to hold it in despite fairly good pelvic muscles. It burns and I am back and forwards to the loo five minutes after I've just been. It also hurts in my abdomen and kidneys. Consultant says its irritable bladder or Intercystial cystitis. Anyone
lcm27
in
Fibromyalgia Action UK
11 years ago
Cystitis even while on anti-biotics? Plus certain infections connected to hypothyroid?
I am currently on Amoxicillin 500, which was not given for cystitis (have a bacterial chest infection) but can be used as such, yet I am still having mild symptoms of a urinary tract infection. I am very prone to them and have been for a number of years. In the past any anti-biotic took care of it without
I am currently on Amoxicillin 500, which was not given for cystitis (have a bacterial chest infection) but can be used as such, yet I am still having mild symptoms of a urinary tract infection. I am very prone to them and have been for a number of years. In the past any anti-biotic took care of it without
ladytelita
in
Thyroid UK
11 years ago
Hi from UK! Have been taking Stalevo for nearly 2 years but restless legs still a trouble in evenings. Anybody tried Horizant?
Stalevo alleviates restless leg on Parkinson's side but I also get restless leg on right side! which I can't shift. I've had restless leg syndrome for years before PD started and I used to run on the spot to shut it up but that doesn't work anymore. Useless PD nurse refuses to believe I have RLS
Stalevo alleviates restless leg on Parkinson's side but I also get restless leg on right side! which I can't shift. I've had restless leg syndrome for years before PD started and I used to run on the spot to shut it up but that doesn't work anymore. Useless PD nurse refuses to believe I have RLS
simplesoul13
in
Cure Parkinson's
11 years ago
Endo and uti
I have another Uti this one is a bad one in total agony had it almost 3 weeks now been on 2. Different antibiotics some times I get so fed up Xxx
I have another Uti this one is a bad one in total agony had it almost 3 weeks now been on 2. Different antibiotics some times I get so fed up Xxx
Sunset81
in
Endometriosis UK
11 years ago
And a return of last weeks UTI :( ..... SO DO ANTIBIOTICS AFFECT ARMOUR THYROID or vice versa?
Had a UTI almost two weeks ago, as discussed in a previous question I am a regular sufferer of UTI's with no apparent cause. Have prophalactic antibiotics on perscription, i.e one to take after intercourse (tres romantic) This has worked for the last 8 months until almost two weeks ago (a week after
Had a UTI almost two weeks ago, as discussed in a previous question I am a regular sufferer of UTI's with no apparent cause. Have prophalactic antibiotics on perscription, i.e one to take after intercourse (tres romantic) This has worked for the last 8 months until almost two weeks ago (a week after
Femme1
in
Thyroid UK
11 years ago
Is it me? or does everyone with PD ride this rollercoaster daily?
Everyday every two hours I go from nauseous and fuzzy to right as rain and back again. When I'm up I'm up and when I'm down I'm down. In the evening when I stop the meds I feel better but less mobile. I'm 47, dx'd 3 years, 3 kids at home (15, 12 and 6), self-empoloyed whew! What I'm on: stalevo
Everyday every two hours I go from nauseous and fuzzy to right as rain and back again. When I'm up I'm up and when I'm down I'm down. In the evening when I stop the meds I feel better but less mobile. I'm 47, dx'd 3 years, 3 kids at home (15, 12 and 6), self-empoloyed whew! What I'm on: stalevo
rons
in
Cure Parkinson's
11 years ago
It pays to price check prescription costs!! This website is a wonderful help!!
For anyone who is dependent on daily prescription medications, it really does pay to do your research. Each time Chris is given a new prescription or our insurance changes, I take on the task of calling and price checking at each pharmacy in our area. The last time our insurance changed and we suddenly
For anyone who is dependent on daily prescription medications, it really does pay to do your research. Each time Chris is given a new prescription or our insurance changes, I take on the task of calling and price checking at each pharmacy in our area. The last time our insurance changed and we suddenly
Beccums
in
Cure Parkinson's
11 years ago
Desperate! Does anyone know a physio that does trigger point therapy for pelvc floor in the UK? I have pudendal neuralgia, IC, endo, SIJD
I have pudendal neuralgia, interstitial cystitis, endometriosis and sacroiliac joint dysfunction. The endometriosis came first had all my life and was misdiagnosed and now it is too far gone to treat. Had surgery 4 times with no success. Scar tissue is severe. Then I developed sacroliac joint dysfunction
I have pudendal neuralgia, interstitial cystitis, endometriosis and sacroiliac joint dysfunction. The endometriosis came first had all my life and was misdiagnosed and now it is too far gone to treat. Had surgery 4 times with no success. Scar tissue is severe. Then I developed sacroliac joint dysfunction
tobydog9
in
Pelvic Pain Support Network
11 years ago
How much levodopa do you take?
My drug regime daily is: 1.25mg Zelapar, 750mg Sinemet Plus and 200mg of Sinemet Plus. I have been taking 300 mg of Amantadine but it led to the blotchy skin condition Livedo Reticulasis, urination difficulties and other disagreeable side effects. Amantadine did help me to cope better with pd and stopping
My drug regime daily is: 1.25mg Zelapar, 750mg Sinemet Plus and 200mg of Sinemet Plus. I have been taking 300 mg of Amantadine but it led to the blotchy skin condition Livedo Reticulasis, urination difficulties and other disagreeable side effects. Amantadine did help me to cope better with pd and stopping
batwing7
in
Cure Parkinson's
11 years ago
Primary Ciliary Dyskinesia
Anyone got it? Looks like Im gonna be tested for it probably. Interestingly one of the syndromes I have involves ciliary motility... hence my deafness. Has anyone been tested for it? I havent a clue how they do it, but cant imagine it involves anything nice lol http://www.pcdsupport.org.uk/index.php
Anyone got it? Looks like Im gonna be tested for it probably. Interestingly one of the syndromes I have involves ciliary motility... hence my deafness. Has anyone been tested for it? I havent a clue how they do it, but cant imagine it involves anything nice lol http://www.pcdsupport.org.uk/index.php
Hidden
in
Asthma Community Forum
11 years ago
What is the connection between Rx and Dyskenesia....
Anyone know what the MOST causative element to dyskinesia is? Is it the duration of the Rx? Is it related to the dosage of the Rx? I'm headed back to the neuro and I'm not sure if he's going to suggest an increased dosage or a different medication. I would obviously like to prolong the onset of
Anyone know what the MOST causative element to dyskinesia is? Is it the duration of the Rx? Is it related to the dosage of the Rx? I'm headed back to the neuro and I'm not sure if he's going to suggest an increased dosage or a different medication. I would obviously like to prolong the onset of
aggiebiker
in
Cure Parkinson's
11 years ago
Low Dose Naltrexone (LDN), good, bad or useless?
I know it has been asked before but has anyone got experiences with LDN (Low dose naltrexone)? I know it's a controversial subject but I would like to try to take LDN and see if I can titrate down the amount of stalevo I need. I currently take Stalevo (3x125 + 5x100), Azilect and Amantadine (3x100mg
I know it has been asked before but has anyone got experiences with LDN (Low dose naltrexone)? I know it's a controversial subject but I would like to try to take LDN and see if I can titrate down the amount of stalevo I need. I currently take Stalevo (3x125 + 5x100), Azilect and Amantadine (3x100mg
rons
in
Cure Parkinson's
11 years ago
Just for fun ..... A non PD post...
Looking back... Those were the days.... Back in 1970 something ... Pans People became Legs & Co ... That was so wrong! 'I am sailing' and Rod hogged the number spot, Leo was hoping the show would go on and a song called ' mouldy o'l dough ' made the charts. I had denim wedges, a denim coat. Charlie
Looking back... Those were the days.... Back in 1970 something ... Pans People became Legs & Co ... That was so wrong! 'I am sailing' and Rod hogged the number spot, Leo was hoping the show would go on and a song called ' mouldy o'l dough ' made the charts. I had denim wedges, a denim coat. Charlie
Hidden
in
Cure Parkinson's
11 years ago
Side effect of Stalevo and Sinemet
I know that the above medications, and others, cause discolouration of Urine. However, on my off days my tremor is not controlled at all and I have noticed that my urine is a natural colour. I think this must mean that I am not absorbing my meds and this is why they are not working. This usually rights
I know that the above medications, and others, cause discolouration of Urine. However, on my off days my tremor is not controlled at all and I have noticed that my urine is a natural colour. I think this must mean that I am not absorbing my meds and this is why they are not working. This usually rights
Court
in
Cure Parkinson's
11 years ago
Has anyone had problems related to "pancreatic insufficiency" leading to unplanned weight loss?
I've lost just over 2 stone (approx 12 kg) in the past year, unintentionally. Whilst I can fit into clothes two sizes smaller, so there are advantages (!), it's beginning to impact on my bone density, so not really a good thing. My docs have been excellent at carrying out a full battery of tests,
I've lost just over 2 stone (approx 12 kg) in the past year, unintentionally. Whilst I can fit into clothes two sizes smaller, so there are advantages (!), it's beginning to impact on my bone density, so not really a good thing. My docs have been excellent at carrying out a full battery of tests,
Womanfriday
in
Hughes Syndrome APS Forum
12 years ago
Interstitial cystitis
Hi all I have just joined this site and I am looking to share advice and support on interstitial cystitis. I was diagnosed with the cronic illness last year and have found that unfortunately belly little is known about it by UK doctors. IC is an illness that causes urinary pain
Hi all I have just joined this site and I am looking to share advice and support on interstitial cystitis. I was diagnosed with the cronic illness last year and have found that unfortunately belly little is known about it by UK doctors. IC is an illness that causes urinary pain
Toots29
in
Pelvic Pain Support Network
11 years ago
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