Experiences with

Primary ciliary dyskinesia (PCD)

hi everyone June some questions about Primary ciliary dyskinesia. I have severe asthma and. My doctor decided to test me for this. I did a genetic test says I have the mutations for this and now she want to send me for this nose noxide test.

HiI was born with Dextrocardia situs invirtus totalis and have Kartagener syndrome , Primary Ciliary dyskinesia. Three months ago I had a really bad lung infection which developed into Bronchiectasis. All the specialists and hospital staff including my local GP have been extremely helpful.

Hello, I would like to know if Mucuna Pruriens can increase dyskinesia. I know the medications can have that effect. My Husband used to take pramiprexole and Stalevo. Now he only takes Stalevo since we have introduced Mucuna. It works great. My Husband could barely walk and now he walks and can function

I have recently had surgery and radiation treatment for breast cancer my Parkinsons symptoms are worse especially dyskenesia, Has anyone else had experience of this and any advice?

Dear members, My mom is a PD patient. She is on CR Levadopa Carbidopa 175mg per day. Ropinirole CR 4 mg, Safinamide 100mg. Her essential proble is peak dose dsykinesia and fatigue closed to off times. The doctor also prescribed Rivamer 1.5. This seems to be cholinesterase inhibitor. Does thisdo good

it won't go away with increased madopar dose. I am not sure my muscle spasm/ dystonia is caused by levodopa itself or amandatine. anyone has experience?

Seven patients suffering from Parkinson's disease (PD) with severely disabling dyskinesia received low-dose propranolol as an adjunct to the currently used medical treatment. There was a significant 40% improvement in the dyskinesia score without increase of parkinsonian motor disability https://www.neurology.org

Hi, I'm new here. Yesterday, after 2 years of searching, my 75-year-old mother was finally diagnosed. We are from Poland, where there is no other treatment apart from amantadine and levodopa. There are also no websites or support groups like yours. That's why I would like to ask if, apart from a physiotherapist

Hi all, I’m 7 years post diagnosis and about 5 years into Carbidopa Levodopa medication. I am fortunate that I don’t need c/l to sleep so I generally don’t take any meds after dinner. The final wear off lasts anywhere from 30 to 60 minutes when I experience more severe symptoms and dyskinesia (I don

Rytary gives me terrible dyskinesia. I’ve tried backing down to a lower dose and it doesn’t work well. So the doc gave me amantadine for the dyskinesia and it gives me insomnia. Going crazy trying to dose. My spouse is having some walking issues and I had to take him for a MRI today. Under stress right

CREXONT shown a statistically significant improvement in “good on” time for PD patients. Amneal Pharmaceuticals has received approval from the US Food and Drug Administration (FDA) for its CREXONT extended-release capsules for Parkinson’s disease (PD) treatment. The oral carbidopa (CD)/levodopa (LD

I have been taking about 2 grams of taurine a day for a few months now. Taurine is supposed to be good for longevity. There are more and more reliable references to this on the Internet. Now I would like to add "Lithium Orotate" 5 mg daily. Has anyone had any experience with this? Here is an excerpt

Here is a link to a helpful study - Pregnenolone for the treatment of L-DOPA-induced ... National Institutes of Health (NIH) (.gov) https://pubmed.ncbi.nlm.nih.gov › ...

In a recent study, published in The Journal of Neuroscience, researchers adopted a novel approach to dyskinesia by treating it as a “bad motor memory.” They discovered that inhibiting a protein called Activin A could stop dyskinesia symptoms and essentially erase the brain’s “bad memory” response

I have become a mess. Symptoms are increasing. I am at a stage where dizziness is perpetual, speech is completely garbled and functions are restricted. I am even dependent on my wife for washing me, Neurologist has recommended 4 C/L 25/100 and 1 CR 125 and 1 CR 250 a day along with Amantadine and Ropinirole

I am 70 years old, had PD over 5 years. Recently, the Sinemet 25/100 only can last 3 hours. My Neuro Doctor prescribed ENTACAPONE 200mg for me. But, other doctor said that will causes my Dyskinesia worse. Besides, I don’t want to take too many med every day. Has anyone ever taken this med? How does it

diagnosed in 2015, My symptoms are:illegible handwriting,, bradykinesia, left foot cannot keep a clog on,Can't rollover in bed, balance issues, poor fine motor skills, can’t fold laundry, can’t put money into a wallet or items in a bag, swallowing issues, speech slurring, extreme fatigue, depression

My question is “Can adding amantadine to my Rytary to help with dyskinesia actually cause dystonia? Thanks for your thoughts.

Hello everyone, I was wondering if anyone has taken Opicapone 50 mg and if they have experienced any side effects. I have tried both 50 mg and 25 mg but overdosed with both and ended up in A&E, where I had a terrible stay but that is a separate story. When it was prescribed to me I was not made aware

I recently ran across a couple of things about gut bacteria that I thought were interesting. The first involves the use of piperine (an extract of black pepper) to keep l-dopa from being converted to dopamine by bacteria in the small intestine, leaving more to travel to the brain; https://onlinelibrary.wiley.com