Hello everyone.
I am a father of two, 44 years old, and I have been diagnosed with Parkinson’s disease about two months ago.
I had had symptoms for about a year before I was diagnosed.
My main symptoms are stiffness on the right side of my body, and trouble using my right hand for using my laptop or my phone.
I was started on requip 2mg, then 4mg after a week, and also Madopar 62.5mg for about a month, and since yesterday I’ve been increased to 1.25mg.
I was increased because I was feeling no improvement with that 62.5 dose. And the doctor said that this dose was very little, so it could be inccreased. But my question is, how long will it take probably before I can feel better with the increase of the dose which is now 125mg
Of course, I understand that it is different for everyone, but I was wondering if some people here could share their experience to let me know how long it took for them to feel better with the Motherboard.
Good evening Boliver … As you say everyone is different & we can all react differently to our Parkinson’s medication.
I have Atypical Parkinson’s diagnosed in June 2023. I was first put on Madopar & then Ropinirole & neither worked for me so I stopped them. I was then put on
Co-careldopa which has worked & I am still on it.
In your case either you may have been misdiagnosed OR you are on the wrong medication OR you need to further increase the dose of the medication you are on for it to work.
Parkinson’s is difficult to diagnose & one of the ways of telling that you have Parkinson’s is that the medication works. If none of the medication works then maybe you don’t have Parkinson’s.
For me the Co-careldopa started to work when I reached my full dose. I started on
1 pill a day for a week, then 1 pill twice a day for a week, then 1 pill 3 times a day for a week & then 2 pills 3 times a day which is where I am now. So after about a month it started working.
Do let us know how things go with you.
Any questions please ask.
Hello Boliver … I too had a positive Datscan, which isn’t 100% proof of Parkinson’s.
About 6 years ago I moved from Shropshire to Sussex & had my initial appointment with the head Gp at my local Gp practice, where I go now. His first question to me was “How long have you had Parkinson’s?” I was shocked saying I don’t have Parkinson’s.
Three years after that I had my first appointment with a Neurologist who arranged for me to have a Spine Mri scan [3 areas of wear & tear damage],
a Brain Mri scan [normal] & a Brain Datscan [positive].
I do not have a noticeable tremor & I was given a number of physical tests where
I scored 26/50.
There were other Parkinson’s tests like writing the expanding circle that I could do.
I did have a heart ultrasound following a [heart] Atrial Fibrillation attack & was told by the technician doing the test that I have a “tremor”.
I do have “gait freezing” … this is where if I stand still for more than two minutes my feet become frozen to the floor & I cannot move.
So I was told it was likely that I had atypical Parkinson’s. I also have Neuropathy.
As I’m sure you know the Parkinson’s “experts” do a lot of “guessing” with their diagnosis.
it’s usually fairly obvious quickly if you are on a big enough dose. You’re young, with a young family, so are presmably very active so you will be likely to need more madopar than the typical patient. I assume you get some benefit but that it wears off quickly. If you don’t notice any improvment with the bigger dose i would get back in touch with your Parkinsons nurse and discuss it with it them.
Personally, I’m 48 now, I felt great on 62.5mg of madopar for about a week, then started to do more activity and it stopped working well, it then went up to 125mg 3 times a day and then four times a day. Basically as I get benefit I do more and it works less well. I’ve always felt the difference in the bigger dose when I take it, certianly over the first week but as Steve says we are all different.
Thanks so much for you answer
I live in France and dont have a nurse only a doctor.
To be honest I am really worried I wont be responsive to modopar as I understand it Will mean much more difficult Time with Parkinson
