Further to my previous post about Madopar not working I’ve decided to wean myself off meds altogether for a while in an attempt to get a definitive idea before my next appointment with the neurologist as to what effect (if any) they’ve been having.
I’ve been told that the only way to effectively diagnose PD is by seeing how you react to PD meds. If you see some kind of improvement, you’ve probably got it, and if not, it may be some “PD plus” ailment - one of the clone illnesses which mimic PD.
When I read about MSA (multiple system atrophy) the list of symptoms is a worryingly close match to mine. Given that I’ve been doubting the effectiveness of Madopar for my particular case, I’m a bit concerned it might be MSA instead!
Does anyone know how long it takes to get Madopar completely out of your system once you come off it? I’ve been on the med for 18months now.
Also, anyone have experience of MSA vs. PD - especially at the diagnosis phase?
Any thoughts or comments welcome.
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You don't say what dose you've been on. From my experience, I initially was prescribed 62.5mg Madopar and in my early stages with mild symptoms, that dose was too weak to make any difference. When my symptoms increased, I went on to 125mg tablets and then I noticed the difference, My Parkinsons nurse said that in her view, people didn't seem to notice much difference until they take 300mg of levodopa a day.
No I’ve only had the opportunity for a couple of chats with a neurologist over the last 18 months since I was diagnosed. There doesn’t seem to have been anything really scientific at all in the way of diagnosis. Just mainly general observation by the neurologist.
I completely agree with Cholavaram. It’s so important to obtain the correct diagnosis. There are many things that it could be, and definitely not all bad!
A member of our support group has recently been to a MDS after a few years of being on drugs that the neurologist prescribed, and they hadn’t helped. He had a lumbar puncture to test the fluid that has been building up around his brain a few weeks ago. Now he is waiting to have a shunt put in within the next couple of weeks and apparently his symptoms will improve by 70-90%! This will be life changing for him. So it’s not all bad, but it’s about getting the correct diagnosis and proceeding from there.
Another member of our support group presents with very similar symptoms to the first. When he was told he has Parkinson’s Plus, he took it upon himself to stop the drugs cold turkey. I would not recommend this, but he had no adverse effects, probably because they didn’t work for him, so his body wasn’t relying on them??
Please don’t waste your time, visit a movement disorder specialist.
Please visit a Movement Disorders Specialist (MDS) for a thorough and accurate diagnosis. Please do not make the mistake of assuming the worst. It is not helpful to your mental state.
In the USA, they are found at University teaching hospitals. Btw, these are the places where you can go to for cutting edge research and treatment for any ailment. I am not sure how to go about it in other countries.
Agree with the movement disorder specialist recommendation. I’ve seen both regular neurologists and the specialists and the latter are much more knowledgeable.
My husband also went all meds, make sure you do it very slowly or you may become ill from fast withdrawal. My husband was on 21 levadopa and it took 3 months to take him off them along wit the 7 clonazepam. He is living with the tremors and overall is 90% happier.
Not really. I did try wean myself off but only did it for about 5-6 days at which point I thought I detected an increase in symptoms so I went back on them. To be honest though it was all rather inconclusive and my neurologist implied that it would take longer to get meaningful results. I haven’t tried again since.
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