Home Test with L-Dopa?: Hey Folks, I am... - Parkinson's Movement

Parkinson's Movement

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Home Test with L-Dopa?

FelixSMueller
FelixSMueller

Hey Folks, I am suspecting Parkinsons (Have the cogwheel rigidity) and I ordered some L-Dopa. Would this work without the Decarboxylase Inhibitor? If not, is there something else I can add to see if it improves symptoms?

I am in lively contact with doctors and visiting one soon, but I would like answers now.

31 Replies
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Wait until you have seen the physician .It is a old adage,, first the diagnosis, then the treatment..

I am seeing physicians left and right but they have no idea whats wrong and its a tiresome process to bring every idea to them all for it to again result in nothing- so can someone please answer the question? GP is useless and neurologist also shrugged it away. next appointment in january. This process is just too slow. I am getting worse and I need to get answers.

If all these doctors “don’t know what is wrong” it unlikely to be Parkinson’s. And if they don’t know , what makes you think we would know?

And as Grumpy 77 says, why Ldopa ?

Well if a doctor sees the cogwheel and his next reaction is "no idea" thats pretty discouraging. After I got home I googled it and it screams parkinsons. But that appt. is over and now long wait times are coming.If its parkinsons, it should respond to LDopa. If it does, I will have a diagnosis which finally opens up research possibilities.

I am suffering from unexplained balance issues, ataxia and tremors for years now and every doctor in that time, which is about seven different doctors in different areas, has had no clue. The word parkinsons didnt ever come up. Neither did other potential causes. Just shrugs , i assume because my symptoms arent bad enough yet.

Hi Felix,

I can see why you are so frustrated, but you were asking advice while only giving half of your symptoms.Write down your symptoms before you see the next doctor, and ask “Could it be Parkinson’s?”

If you want to try a course of treatment, to see if it helps, ask the doctor, and try the regular standard treatment

i will definitely do that. until then (january) what do you suggest?

I would try to find a “Movement Disorder Clinic” if possible one attached to a teaching hospital, even if you have to drive a long way. The one I went to, the first visit was booked for two hours, so was extremely thorough. As you have found out, you are a difficult , complicated case, and a 15 minute consultation will not be enough.I hope you get yourself sorted out.

Good luck.

pdpatient
pdpatient in reply to condor39

Condor, sage advice

Measured therapeutic amounts of levodopa are not dangerous so I have no problem with this idea. However, without the decarboxylase inhibitor levodopa is prone to cause nausea. Even if you do not actually upchuck if you have a lot of nausea that will make it hard to assess the therapeutic effect. A way around this problem is to use unconcentrated Mucuna bean powder - it apparently has cofactors that mitigate the nausea. Here is a source on Amazon:

amazon.com/gp/product/B00DV...

" The concentration of Levodopa in our kapikacchu is approximately 4-5 percent. Concentrations can vary from season to season depending on environmental conditions.

By Banyan Botanicals"

Any person can buy this and try it – and many people evidently do – so it is not like you are doing something crazy. It took me a tablespoon or two of this to see any effect. I would start with 1/2 teaspoon which is what they recommend and work my way up from there. Without the decarboxylase inhibitor much of the levodopa gets converted to dopamine in the gut, so the effective dose is much less what you actually ingest.

----

Before I was actually diagnosed several doctors did not know why I had a shaky arm. One-sided resting tremor is pathognomonic* for Parkinson's.

*specifically characteristic or indicative of a particular disease

thanks for this useful reply. So youre saying try mucuna instead of straight l-dopa. Fair enough! So I guess a tablespoon is a sensible starting dose and then slowly add more every 15min or so?

Levodopa is absorbed in the small intestine so it has to make its way out of the stomach. Give it at least several hours or even all day. No hurry here.

pdpatient
pdpatient in reply to park_bear

Parkbear, this is getting dangerous. This is way beyond the call of this group.

park_bear
park_bear in reply to pdpatient

I agree that in most cases we should be sending people to the doctor for diagnosis. However this fellow has done more than his due diligence:

"I am seeing physicians left and right but they have no idea whats wrong ...GP is useless and neurologist also shrugged it away... Well if a doctor sees the cogwheel and his next reaction is "no idea" thats pretty discouraging...I am suffering from unexplained balance issues, ataxia and tremors for years now and every doctor in that time, which is about seven different doctors in different areas, has had no clue."

What danger do you see here?

pdpatient
pdpatient in reply to park_bear

Parkbear, yes I am indeed conflicted. Unless of course I missed something. Where does this person live and why did they not go to an MDS? At a minimum do that as Condor suggested and then try out Mucuna?

park_bear
park_bear in reply to pdpatient

I agree he should see a MDS. Did not intend to suggest otherwise.

Meanwhile I do not see any harm in trying Mucuna.

Grumpy77
Grumpy77 in reply to park_bear

This seems a bit bizarre but not unusual because even though PD symptoms are well documented academically and should be well known by non-specialist GPs.. strange enough many of them still miss it

My GP suggested arthritis to asymmetric cogwheel hand tremor symptoms 😀

Felix, i use 1/8 of a tsp. of Mucuna powder 9 am and 2pm. This to start with. I drink green tea after..if you search "my.mucuna protocol" someone posted it, cant remember the name. Tired today and memory working funny after a fall.

Best idea is do all the lifestyle things recommended for Parkinson’s as they won’t hurt and are good for everyone and every condition. Ie remove all processed and junk food, and deep fried foods and sugar and eat lots of vegetables, exercise every day and try and reduce stress. Find any sources of pesticides, poisons, mould and get rid of it. Get your vitamins and b12 and folate checked out. I would save chemicals until later if it doesn’t make you feel any better.

No, you want to always start slow. It was suggested to start at 1/2 teaspoon and gradually build up to 1 tablespoon or more. Your systems needs to gradually adjust to the dosage. If you go gradually you are more likely to avoid any negative side effects.

I went through 7 years, with those same symptoms, and several Doctor’s did not give me a diagnosis. Parkinson’s was never mentioned! Finally, after we moved from a small town, to a city, with a regional medical center, I was examined, by a Family Doctor, who, when he saw my cogwheel rigidity, and resting tremor, and stiffness, said that, in his opinion, I had Parkinson’s. He referred me to a movement disorders specialist, who examined, and tested me, and did the Sinemet trial run on me. He diagnosed me with Parkinson’s. A Hospitalist also did a neurological exam, and agreed with the Parkinson’s Disease specialist! So, waiting all that time, suffering at times, it took a long time for my problems to get diagnosed. It was hard to be patient all that time! I had many frustrating moments.

Wow, felix i can relate. My dr is ok but my neurologist is dismissive 100%. Im starting to take Mucuna pruriens, a natural form of levodopa. I use green tea with it. I dont know if this is helpful. Be well.

Condor is right, you don't ’self prescribed L dopa’ because you suspect... you have to be formally diagnosed by a specialist

It's a mystery to me why you're so eager to want to get into Ldopa

pdpatient
pdpatient in reply to Grumpy77

Only to find out shortly thereafter that it's no panacea😇 It comes with it's own set of issues.

Also, I am in agreement with Condor that the closest teaching hospital is the best place to go. I would go whether or not they have a Neurology wing. Doctors there are generally the very best in America and can at least triage better.

Grumpy77
Grumpy77 in reply to pdpatient

I agree, Theoretically doctors are the best... but practically they do misdiagnose, I got misdiagnosed myself during my first check up for initial symptoms by my GP

Despite that, in my opinion it's not good enough reason to self-prescribe

pdpatient
pdpatient in reply to Grumpy77

Grumpy, I not saying all doctors. Only the ones at teaching hospitals. I correct myself that say that this is the case generally in all teaching hospitals around the world. Not just in America.

pdpatient
pdpatient in reply to Grumpy77

Lol, you are right. My GP or PCP as we call them in the USA, said that given the lack of Parkinson's in my family tree, there was a strong possibility that I didn't have Parkinson's.

Grumpy77
Grumpy77 in reply to pdpatient

LOL, even doctors can be naive 😃

I may be going out on a limb here, but I think lack of arm swing and loss of sense of smell are strong Initial indicators., as well as slowness of movement. Do you have any of these?You could try the Mucuna available from health shops. If it works then maybe you do have PD, but if it doesn’t I don’t think you can rule it out.

It’s very frustrating not getting a clear diagnosis.

Even with Mucuna or Levodopa, your symptoms may not immediately diminish, so this would not be a good indicator. Further, any tinkering with your endocrine system may cause additional harm, ie, it could lead to a reduction in your body's natural production of dopamine, leaving you worse off. Please, get a diagnosis. In the meantime, I'd strongly suggest exercise. If you're not in great shape work up slowly to a good twenty minute aerobic routine, get things pumping at least once or twice a day.

“I ordered some L-dopa”

Where? What kind?

I would focus on non-chemical solutions before moving into LDopa. I've been gluten-free, dairy-free, and sugar-free for over two years. I work out HARD for about two hours a day. After being diagnosed about four years ago, I just recently went on LDopa...but continue my non-chemical solutions. It's easy to just take a drug which may or may not work for you. If you really want to fight the disease, I suggest you put in the hard work to do so.

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