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Primary ciliary dyskinesia (PCD)
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When is it supposes medication have an effect?
By middle of November 2020 I was diagnosed with a “clinical picture suggestive of PSP”, being freezing of gait (FoG) my claim. This is the end of a long road of claims (inbalance, neck pain, radiculopathies, a.s.o.) after being submitted in November 2015 to a ACDF surgery to decompress my spinal cord
By middle of November 2020 I was diagnosed with a “clinical picture suggestive of PSP”, being freezing of gait (FoG) my claim. This is the end of a long road of claims (inbalance, neck pain, radiculopathies, a.s.o.) after being submitted in November 2015 to a ACDF surgery to decompress my spinal cord
BluesHealer
in
PSP Association
4 years ago
Starting Mucuna
reposted You will forgive me if this information has already been disseminated. I am a PWP, diagnosed 2 years ago, after 2 years of misdiagnosis. I currently take Amantadine 3x/day as my only PD med. My neurologist has been "pushing" me to start c/l. I have been reluctant , up until
reposted You will forgive me if this information has already been disseminated. I am a PWP, diagnosed 2 years ago, after 2 years of misdiagnosis. I currently take Amantadine 3x/day as my only PD med. My neurologist has been "pushing" me to start c/l. I have been reluctant , up until
docjleonard55
in
Cure Parkinson's
4 years ago
Starting Mucuna
You will forgive me if this information has already been disseminated. I am a PWP, diagnosed 2 years ago, after 2 years of misdiagnosis. I currently take Amantadine 3x/day as my only PD med. My neurologist has been "pushing" me to start c/l. I have been reluctant , up until now. With worsening tremor
You will forgive me if this information has already been disseminated. I am a PWP, diagnosed 2 years ago, after 2 years of misdiagnosis. I currently take Amantadine 3x/day as my only PD med. My neurologist has been "pushing" me to start c/l. I have been reluctant , up until now. With worsening tremor
docjleonard55
in
Cure Parkinson's
4 years ago
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Avoid levodopa phobia
I was reading Simon’s latest article about the PD drug development pipeline, which is a good read anyway - https://scienceofparkinsons.com/2020/12/02/drug-pipeline/ - and watched this video from Dr Kelly Mills of Johns Hopkins University about disease-modifying vs symptomatic therapy - https://youtu.be
I was reading Simon’s latest article about the PD drug development pipeline, which is a good read anyway - https://scienceofparkinsons.com/2020/12/02/drug-pipeline/ - and watched this video from Dr Kelly Mills of Johns Hopkins University about disease-modifying vs symptomatic therapy - https://youtu.be
Cagey84
in
Cure Parkinson's
4 years ago
Interstitial cystitis- pain worse after urinating?
Hello, does anyone else with interstitial cystitis find that they feel worse during and especially after peeing? I keep reading people with IC feel pain and the need to go and relief after peeing, but I feel even worse after :( mainly a burning sensation and sometimes extreme pains that shoot up the
Hello, does anyone else with interstitial cystitis find that they feel worse during and especially after peeing? I keep reading people with IC feel pain and the need to go and relief after peeing, but I feel even worse after :( mainly a burning sensation and sometimes extreme pains that shoot up the
CandleCat
in
Pelvic Pain Support Network
4 years ago
“Effect of calcifediol treatment and best available therapy versus best available therapy on intensive care unit admission and mortality...
“Effect of calcifediol treatment and best available therapy versus best available therapy on intensive care unit admission and mortality among patients hospitalized for COVID-19: A pilot randomized clinical study” Highlights •The vitamin D endocrine system have a variety of actions on cells and tissues
“Effect of calcifediol treatment and best available therapy versus best available therapy on intensive care unit admission and mortality among patients hospitalized for COVID-19: A pilot randomized clinical study” Highlights •The vitamin D endocrine system have a variety of actions on cells and tissues
LAJ12345
in
Cure Parkinson's
4 years ago
ANXIETY TREMOR DYSKINESIA
Hi Pwp please help, I am trying to decipher the symptoms that you might have experienced, which increases with anxiety. If you have anxiety and tremor as part of your symptoms, with occasional dyskinesia, would you say you tremor more, or your dyskinesia increases with anxiety? Like when you
Hi Pwp please help, I am trying to decipher the symptoms that you might have experienced, which increases with anxiety. If you have anxiety and tremor as part of your symptoms, with occasional dyskinesia, would you say you tremor more, or your dyskinesia increases with anxiety? Like when you
OREOLU
in
Cure Parkinson's
4 years ago
Anyone else taking Ongentys?
For the past 6-8 months my levodopa has not been doing the job. My dosage was one 50/200 mg Sinemet ER (Extended Release) and one 25/100 CR (Continuous Release) every three hours. I also was taking two Selegiline 5 mg daily. I was wearing off in 2 hours. If i waited till my next 3 hour dosing time,
For the past 6-8 months my levodopa has not been doing the job. My dosage was one 50/200 mg Sinemet ER (Extended Release) and one 25/100 CR (Continuous Release) every three hours. I also was taking two Selegiline 5 mg daily. I was wearing off in 2 hours. If i waited till my next 3 hour dosing time,
Isthistheone
in
Cure Parkinson's
4 years ago
Catheter for retention
Hi, Is anyone on here catheterised after going into retention with UTI? I get them frequently but this is the first time I've been catheterised. Just needed a bit of advice really. Anything would help TIA
Hi, Is anyone on here catheterised after going into retention with UTI? I get them frequently but this is the first time I've been catheterised. Just needed a bit of advice really. Anything would help TIA
bonnieclyde97
in
Endometriosis UK
4 years ago
Intisistal cystitis
Intisistal cystitis.....who can tell me how this is treated. I had bladder surgery before after 4 suspected uti tests all of which were negative but surgery never told me and kept giving antibiotics. 3 years on I again have symptoms of uti but oct sample was negative. Been given more antibiotics
Intisistal cystitis.....who can tell me how this is treated. I had bladder surgery before after 4 suspected uti tests all of which were negative but surgery never told me and kept giving antibiotics. 3 years on I again have symptoms of uti but oct sample was negative. Been given more antibiotics
JenRow7
in
Endometriosis UK
4 years ago
Gratitude; transitioning away from Levodopa; emulating John Pepper's Azilect program
Many thanks to this invaluable community! We (pwp & caregiver) have gained much insight from the folks here over the last few years, especially the courage to experiment with different approaches. Otherwise, our pwp would likely still be highly overmedicated, under the advice of his neurologist. He would
Many thanks to this invaluable community! We (pwp & caregiver) have gained much insight from the folks here over the last few years, especially the courage to experiment with different approaches. Otherwise, our pwp would likely still be highly overmedicated, under the advice of his neurologist. He would
Dupree
in
Cure Parkinson's
4 years ago
Focused Ultrasound
I had my FUS treatment two days ago at Sonimodul and although it wasn’t easy with a full on dyskinesia attack I really enjoyed the sonications where I knew my brain was being fixed. My left side is symptom free now and I can walk. Thoroughly recommended. The team there are incredible and I felt my brain
I had my FUS treatment two days ago at Sonimodul and although it wasn’t easy with a full on dyskinesia attack I really enjoyed the sonications where I knew my brain was being fixed. My left side is symptom free now and I can walk. Thoroughly recommended. The team there are incredible and I felt my brain
Trixiedee
in
Cure Parkinson's
4 years ago
Mucuna Dyskinesia Shocker!
Hi gang. Sorry for the long post but something has happened that has somewhat surprised me and I need both to share to provide others with information, offer - whilst not an apology - at least make an admission - and lastly ask for advice. Here goes: Dxed 5 years ago. Started on Azilect and then added
Hi gang. Sorry for the long post but something has happened that has somewhat surprised me and I need both to share to provide others with information, offer - whilst not an apology - at least make an admission - and lastly ask for advice. Here goes: Dxed 5 years ago. Started on Azilect and then added
jeeves19
in
Cure Parkinson's
4 years ago
Hysterectomy at 29
So I had hysterectomy (open surgery) at the very end of July this year so I'm 16 weeks post op.... Since my operation I had times of urinary retention which seems to have resolved but also around 6uti more recently iv had noticeable blood in the urine and severe back pain on the left side this has been
So I had hysterectomy (open surgery) at the very end of July this year so I'm 16 weeks post op.... Since my operation I had times of urinary retention which seems to have resolved but also around 6uti more recently iv had noticeable blood in the urine and severe back pain on the left side this has been
Hidden
in
Endometriosis UK
4 years ago
Cystitis and back pain
Hi. First time here. Maybe someone had something similar. It’s from October that I fight with cystitis, last one after a sexual intercorse with my boyfriend. I had in total 4 cystitis, all four treat worn antibiotics, but from the second one I had a terrible back pain!!! After a a&e they found (again
Hi. First time here. Maybe someone had something similar. It’s from October that I fight with cystitis, last one after a sexual intercorse with my boyfriend. I had in total 4 cystitis, all four treat worn antibiotics, but from the second one I had a terrible back pain!!! After a a&e they found (again
Cote88
in
Women's Health
4 years ago
A question for my most knowledgeable friends around the world.
Recently, three years after my diagnosis, after I stopped mirapexin, I switched to an effervescent formulation of levodopa called Sirio 25/100. I take half a tablet in the morning and a half after lunch (plus 1 mg of rasagiline in the evening). Why is the best time of the day in the evening from 5pm
Recently, three years after my diagnosis, after I stopped mirapexin, I switched to an effervescent formulation of levodopa called Sirio 25/100. I take half a tablet in the morning and a half after lunch (plus 1 mg of rasagiline in the evening). Why is the best time of the day in the evening from 5pm
Lucal
in
Cure Parkinson's
4 years ago
Long term use of large doses of ldopa. Any risks?
Kinda following on from my previous post about high concentration ldopa supplements. Several forum members - off the top of my head Strevenmast, ErnieDiaz, Cons10 (sorry if I got any of those wrong) - have reported good short (good symptom relief) and medium (for at least a year or more, and no nasty
Kinda following on from my previous post about high concentration ldopa supplements. Several forum members - off the top of my head Strevenmast, ErnieDiaz, Cons10 (sorry if I got any of those wrong) - have reported good short (good symptom relief) and medium (for at least a year or more, and no nasty
Hidden
in
Cure Parkinson's
4 years ago
99% ldopa products are not really 'mucuna'
Firstly, this isn't a negative post about ldopa supplements or mucuna. In fact, I have several containers of both. There's a number of articles and studies online that are quite positive about mucuna as a prescription levodopa alternative. Here's one that was posted in a recent thread: https://healthunlocked.com
Firstly, this isn't a negative post about ldopa supplements or mucuna. In fact, I have several containers of both. There's a number of articles and studies online that are quite positive about mucuna as a prescription levodopa alternative. Here's one that was posted in a recent thread: https://healthunlocked.com
Hidden
in
Cure Parkinson's
4 years ago
Rasagiline and Depression
I have been taking Azilect and then the generic Rasagiline for 12 years after being diagnosed at 34. I also took generic Dopamine Agonists for ten years but had such pronounced OCD behavior that I finally quit cold turkey two years ago. Today I take Rasagiline 1mg, 100mg Amantadine, and CL 25/100. I've
I have been taking Azilect and then the generic Rasagiline for 12 years after being diagnosed at 34. I also took generic Dopamine Agonists for ten years but had such pronounced OCD behavior that I finally quit cold turkey two years ago. Today I take Rasagiline 1mg, 100mg Amantadine, and CL 25/100. I've
jlmerten
in
Cure Parkinson's
4 years ago
Help Staying Asleep!!
I have Parkinson’s and I’m 59. Had it for awhile I guess. I go to bed around 10:00 pm and wake up around 2:00 am. I lay alone on the sofa until morning. I want to sleep so desperately. Falling asleep is easy. Staying asleep is impossible. I’ve tried everything natural there is on the market. I take a
I have Parkinson’s and I’m 59. Had it for awhile I guess. I go to bed around 10:00 pm and wake up around 2:00 am. I lay alone on the sofa until morning. I want to sleep so desperately. Falling asleep is easy. Staying asleep is impossible. I’ve tried everything natural there is on the market. I take a
Kevinbg
in
Cure Parkinson's
4 years ago
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