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.

I have recently been diagnosed with a low red blood count (RBC) as well as reduced haemoglobin levels. It appears that the red blood cells are being broken down resulting in a yellow tinge to the skin because of the release of the pigment bilirubin. The cause of this is presently being investigated however

Does anyone has experience with green tea extract capsules instead of matcha powder? Since the Mucuna capsules (I use 40% L-Dopa) are already very expensive and matcha powder is even more expensive, I would like to try green tea extract capsules. I have found 3 products from a supplier I trust 1.

Hello everyone, Last Sunday I joined the Zoom call and shared my experience using Mucuna, the issues I've had with the Barlowe's Mucuna, and my own Mucuna mix. I had been taking Barlowe's 40% brown mucuna since late 2020, I started with green tea extract ([i]EGCG from Life Extension x2 caps[/i])

My father has been taking amantadine from last 2 months and taking syndopa plus 125 3 times a day from last 7 years. Recently he has been experiencing swelling in his legs ankle and lower leg. The swelling is more in left leg. Could this be due to amantadine or something else

Its been a long drawn out process but I will be having my DBS surgery in two weeks on 31st December. So if all goes well I'll be starting next year all wired up and by February ready to go.Just a few quick questions. The surgeon tells me that I should be ready to walk out the next day. For those who

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