So my restless legs are turning into something more, I'm afraid. I am talking prami for it and I notice various other things it seems to help with. I stumbled across a list of non-tremor indications of PD and I have a few of them and those symptoms are aided by prami.

So PD is a wide range of symptoms for many and diagnosis is somewhat subjective, and without specific cure. There are numerous things I can do myself to analyze my situation at this point.

Is there anyone out there that wishes that they hadn't gotten the diagnosis done? I imagine it leaves quite a mark on my health insurance, employment, etc.

Restless leg and a softer voice were some of the symptoms I had long before I was diagnosed with PD. Benfotiamine seems to have stopped the restless leg and brought my voice strength. Who knows, maybe it will stop or reverse your PD symptoms. I use 500-750 mg twice a day.

Yes, actually I started taking benfotiamine a few months ago in an effort to correct some suspected nerve damage. I've also been treating my other symptoms with supplements for as long as a decade. For urinary problems I take saw palmetto .. lots of it .. about 3 grams a day and it has to be the berries, not the oil. For vision I've been exercising my eyes with eye patches and taking eye supplements.

I'm getting ready to try B2 tablets. I read one study that mentioned that B2 supplementation gave lasting results as far as tremors goes.

I have also doubled my omega3 intake to 4800 (4 pills)

High does of vitamin C have gotten rid of joint pain, mainly shoulder pain, which I don't think is related to PD but I've had this problem for about 3 yrs and it presents while getting out of bed.

I keep my vitamin D levels pegged north of 50.

I am also starting on magnesium .. specifically magnesium threonate, which crosses the BBB. Also magnesium oil via skin absorption.

The first thing you need before any investigations or diagnosis is whatever insurance you're short on - life insurance, disability, long term care, etc. One question on their forms is often "Have you ever seen a doctor for ..........." If you answer yes, they want a lot more details and you may not qualify.

yes, i think you should get a diagnosis. if you have pd, never too soon to try to slow progression, either thru volunteering for a clinical trial or trying your own experiments. but diagnosing yourself, i don't get it.

Thanks everyone. I'm working quite hard on slowing the advance of PD. It seems to me that all the conventional treatments are really supplanting dopamine. First I want to learn more about myself and how/if I respond to any non traditional methods.

Once I'm supplementing dopamine in a big way it will be very hard to tell what might work. Right now I have a small prescription for prami that allows me to see myself with some add'l dopamine, and I'll be able to compare those results to some of these non traditional methods that docs would just roll their eyes at.

Does that seem like a good plan?

yes it does.

I agree with this, get all possible ins coverages in order first, before seeking na official diagnosis.

just my two cents here but you know your body better than anyone-and unless you are prepared for the dopamine agonist regimen (which can be extremely addictive) neuros commonly prescribe for initial stages of pdism, well.why? diagnostic tests are not as conclusive as the medical profession would have us think imho. With so many many variable cause scenarios and rate of progression a diagnosis can be a powerful subconscious suggestion...better to keep the perception of your symptoms in the grey area because then there is room for positive progression rather then degeneration. Its been proven that placebo effect is very high in PWPers so why not use that to your advantage? meanwhile it appears you are moving forward with giving nutrients -get lots of exercise...do some spiriitual inquiry...meditate ....yoga etc but learn to t rust your body and to listen to it eventho right now it may feel as if it is betraying you. Subconoscious beliefs are powerful and now you are being asked to examine them because true healing effects a paradigm shift on many many levels. Having said all this a test for Lymes and toxins could be useful...and check out "Ancient Walking to Primal Rythms" on facebook where scientific inquiry meets wholistic approach to meeting your challenges in partnership with a brilliant, deeply intuitiive healer.

You'll be OK! all the best - MD

this is a solitary journey for in the end it is with oneself one must reconcile......and to be sure- it iis only through the assistance and kindness of others that we may learn that which is incumbent and perhaps necessary to our growth. Still, your heart will ache and long for that which time has not yet granted its due....and so let there be patience and stay steadfast in the knowing that surely as the sun rises to a new day a larger grnd design weaves the threads of our lives and what else can we do but hold steadfast for that which we dream...