So yesterday I went to see my neurologist and ......

[Mike1942]

By 2.30 he was running 1hr late. So I sat in the waiting area and thought " why the hell am I here". Everyone else needed his help . I was just adding to his backlog. I wanted advice on reducing 6mg Rotigotine patches . (I reasonably believe that my exercise routine including running produces my own Dopamine). When I asked for a test to confirm how much Dopamine was currently in my body I was told " no blood test can determine how much Dopamine you have at any given time".

This begs the question. (I did not ask it). "How was the decision arrived at to pump me full of L-dopa and Rotigotine". And why ? This is very old style ( but tried and tested ) medication. When asked about alternative medicines he had never heard of Mucanu Purien's !!!! And passed a negative response to its possible good effects.

This reminded me many years ago when Mary Whitehouse was asked which porn site had seen that was going to corrupt young people,. she replied " I never watch that kind of filth" !!

How can you pass a judgement on something you have no personal experience of ?

[Xenos]

You are right... What can I say ?

Mine had never heard about nicotine therapy, that is supposed to have cure certain PD cases in his own hospital.

Nor had she heard about mannitol...

[Astra7]

Mine had never heard of NAC. Neither of them.

[johntPM]

If you and your consultant are prepared to spend a bit of time measuring the impact of different drug regimen on you then, in many cases, it's easy to determine whether your drug regimen is well chosen. There's no need for high-tech equipment, just old fashioned titration. Basically, it's running a drug trial on yourself.

Test yourself (side-to-side tap test, UPDRS III, dyskinesia, a diary of how you feel, etc...) when you are "on" and "off" (practically, first thing in the morning before you take your drugs). Do this with your existing regimen. Suppose the result is A. Make a small, temporary increase in dose, changing only one of your medications. Suppose the result is B. If B>A, make the temporary dose permanent. If B<A, try moving down a dose. Carry on in this way, changing only one drug at a time, until you have found your best regimen.

The cases where this technique fails to work are those where you need to make a trade off between, for instance, "on" time and dyskinesia.

John

[Mike1942 in reply to johntPM]

Thank you JohntPM. A well written and informative reply. I have take your advice onboard. And will document all my reductions , starting today at 0215 hrs my Rotigotine patches will have 10% cut off. "One step at a time".

[Lmji]

Hi Mike

I have been using mucuna For a number of months I can safely say that it's worth it the only issue is the amount to use and unfortunately your neurologist will refuse to assist because it's not worth his interest financially to do so

The big pharmaceutical companies do there at most to not only get us sick but maintain the level of sickness because at the end of the day we are nothing but a cash cow to them

The only advice I can give you is to do your own research and either look for a new neurologist or just don't telling what you doing good luck

[Rosabellazita in reply to Lmji]

U r so right

[bassofspades]

Exactly why i fired my neurologist and took matters into my own hands. I bet most people in this group know more about pd than the average neurologist. Not kidding.

[NRyan in reply to bassofspades]

When I went to see a Neurologist and told him of my symptoms and what I suspected (my dad had PD for 23 years), he asked me if I was ever sexually abused. Fucking idiot! I am a therapist who has worked with PwPD, including my own father. I think I know PD when it strikes my own left hand. By the way, I was never sexually abused. THANK GOD! I have decided to skip the Dr route....conventional medicine is not for me. Ridiculous!

[SilentEchoes in reply to NRyan]

I gasped when I read this; I asked for a neuropsychiatric evaluation to establish a baseline for myself and was asked if I had been raped! My mom has had PD for 23 years. What is the reasoning behind this line of thinking and what could it possibly have

[DebiChris in reply to bassofspades]

Its best to have a movement disorder neurologist. They have more training then a regular neurologist

[Hil101]

I think It's all to do with neurologists being the dispensing arm of the pharmaceutical industry. Simple as that 😁

[bassofspades]

Before you get pissed off at your dr for asking that, look at the material at pdrecovery.org He might have been looking into a psychogenic cause and that can be curable. There is a lot to read and learn from pdrecovery.org

[Mike1942 in reply to bassofspades]

Will do. Thanks.