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.

. * Primary ciliary dyskinesia. While I'm sure many of us have never heard of most of these (except PBC, of course) think how frustrating it must be for those few who do have any of these conditions. Little help or information for them I would imagine. To them, though, it is their world.

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.

It's been 3 months since my DBS surgery and 6 weeks since switch on. Since then I've had two follow up conversations with the programmer, both telling me to leave my medication alone and increase the stimulation slowly. Since switch on I've been troubled by severe dyskinesia. Its exhausting. My next

Sorry for any confusion as I have been working off my phone and desktop and it seems like I had created two accounts. Les2024 is also me…🙈 Started having action tremors in 2019 on my right side. After 2 1/2 years and two neurologists I was diagnosed in 2021 at the age of 44 with Parkinson’s. They

Bonjour ,je suis diagnostiquee depuis 2o18 ,je prends 1 modopar 250 à 6 h ,9h ,12h ,15h ,18h .je n en ai pas besoin la nuit .Cela fait 6 mois que ça allait bien ,mais je sens que ça commence à être juste ,toutes les 3 heures je passe 1h ,pas vraiment off mais presque,surtout tres tres sommeil ,le temps

Does anyone have dyskinesia taking 1mg Azilect in conjunction with Kinson?Do you have experience or think can we take Azilect on and off? eg take it to help with prolonging kinson's effect and when dyskinesia is worse then pause it until need it to work with Kinson again, ànd repeat the step as it happens

Diagnosed PSP Dec 22,, have issues with balance, swallowing, voice and vision. I am freezing a lot especially at doorways. Has anyone tried hypnosis

My wife is in early stage PD at 78.She is taking (and adjusting to) levodopa. Her neurologist is quite vague on this med but indicated it is the one she should take. She is having trouble sleeping and bowel problems. She has leeway in drug concentrations but prefer to stay with what he says until he

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