Hello nice people, I have been diagnosed 2 years ago, I have mild symptoms I believe, only left arm reduced movements and slowness of my all body movements. I have no pains , no nightmares, no constipation, no loss of smell and no to all other symptoms. I sleep 8 hours per night. My sister describes my behavior like I am under the influence of some drugs.
I have always refused to take levodopa because I am afraid of the dyskinesia. I take mucuna dopa , vitamin b1 , vitamin b12/ vitamin D, omega 3 and magnesium supplements.
Just recently I went to see a new neurologist because I am doing everything by myself and my family suggested I went to see a doctor.
So the new young doctor said I should take Levodopa and that the dyskinesia caused by Levodopa is a myth because nowadays with low dosage this doesn’t happen.
I don’t want to take it but my husband insists I should try. It’s my body and I will do whatever I decide is good for me. I don’t want to change my slowness to a faster pace but with dyskinesia.
What is your opinion?
thanks for your answers and be blessed always!
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LorenzaS
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"... that the dyskinesia caused by Levodopa is a myth because nowadays with low dosage this doesn’t happen."
Change doctors. He/she doesn't know what they are talking about.
Bottom line; any PWP can get dyskinesia from any dose of levodopa over any period. There are comments on this forum from people who got dyskinesia after a few months, even a few weeks and some within 15 minutes from their very first, minimum dose.
Odds are this would not happen to you. The frequency of dyskinesia increases at 800 mg +/day and it is true that a small percentage of PWP take a minimum dose of levodopa for an indefinite period without getting dyskinesia.
I agree to find a new doctor, but also strongly feel you should select a Movement Disorder specialist! They are highly trained and are the best choice for anyone with PD.
That's good to hear, Nitro53. Can you share your dosing schedule and whether you take DHA fish oil to keep dyskinesia at bay? I'd like to know how long your ON time is per dose of mucuna, and if you take the seed powder or capsules of L-dopa extracted from mucuna?
I would recommend the book "Mucuna vs.Parkinsons by Rafael Gonzalez. It tells you how to work with your Dr. and how you can make your Mucuna work better. Some Dr's will prescribe carbidopa to help the Mucuna become more effective. You have plenty of time and don't need to to rush into it since your symptoms are mild. Parkinsons drugs won't slow progression but exercise will.
The answer is not in a pill. The answer is becoming the healthiest you so that if and when you do take meds you'll be able to keep them to a minimum and they will be most effective.
I would suggest finding a Dr who respects you and will work with you.
I would also recommend looking into b1-therapy.
You have to do what's right for you and be comfortable with it. The more you educate yourself about your options, the more empowered you will feel. You'll be confident and no one will question your decision.😊
Firstly, know that the active ingredient in mucuna is levodopa. Secondly, levodopa is strictly for symptom relief. If your current regimen is satisfactory for you, there is no need to change it. Thirdly, if you find that a particular dosage of levodopa causes dyskinesia, you can taper the dosage downward until the dyskinesia stops. Levodopa treatment should not be halted suddenly. Nor is it something to be afraid of.
I disagree that it's not something to be afraid of. And there is evidence out there that the naturally occuring dopamine in mucuna is a lot less likely, if not at all, to cause dyskinesia. In my opinion, Lorenza is correct to stay away from the synthetic version, and I am doing the same myself.
True only for the raw Mucuna seed powder. Not true for the processed and refined versions which are identical in molecular composition to synthetic Levodopa.
I will not interact with your disdainful comments again. I have enough stress in my life. You go on with your judgments and your accusations. It won't do your PD any good either. HU really needs a block function.
I do object, however, to levodopa fear mongering as it perpetuates the mythology that what you call "synthetic" levodopa is something to fear. Levodopa phobia is common and awful problem in the PD community. It robs PWPs of what could be their best remaining years, often whilst they fumble around looking for 'natural' solutions. The thing is, they do not get those years back. PD does not stop progressing whilst one tries a million other things.
Please do not respond to any of my posts or comments again. Your interpretations of things are very different from mine, and I doubt based on your rants that this will ever change. Your mind seems quite closed based on pretty much every comment I have seen from you since I got here. Too bad too because everyone's experience is valuable. But method of delivery is also valuable. Ad hominem attacks discredit the attacker.
You don't get to pick and choose who responds to what, I am afraid, that is a childish request. If you are going to mislead people and spread misinformation based on hearsay there's a risk you will be called out on it.
The only person guilty of ad hominem attacks in this thread is you.
You're allowed to be afraid of whatever you like. And I am allowed to point out for the benefit of others that this fear has no rational basis, or at least none that you have shared.
Come on kevo you can do better than cite Russian studies based on 4 cases. Russians are not in fashion lately, the corrupt oligarchs have argued over what belongs to whom and are at war with others in the rest of the world. (‘Pax phobia’?)
All Pwps are afraid of Ldopa-induced dyskinesias, don't you have any? Blessed you.
I'm also very afraid to go up in the elevator ('lift phobia'?) because I know how they build them and how they do maintenance in palaces but if I have to go to the seventh floor I would use it.
So it's a question of risks and benefits and correct information as always and in my opinion there is no such thing as 'levodopa phobia' but it is just yet another label with which to spread propaganda.
From your link:
’Conclusions
Many phobias exists in PD patients and can range from needlephobia (relevant to subcutaneous treatments), claustrophobia (relevant to brain magnetic resonance imaging) and aversion to surgical therapy involving the brain and here we focus on a specific levodopa related phobia.
‘ …and aversion to surgical therapy involving the brain..’
‘( brain surgical therapy fobia’?)
Lol extra lol
Russian Germanic communist propaganda , heirs of Pavlov and his dogs , nothing as good as Western mainstream propaganda.
My wife is afraid of spiders. That doesn't mean they are anything to be afraid of. And what exactly is natural levadopa? How does it differ from C9H11NO4? Macuna is different to ldopa tablets like sinemet because
1) it has other stuff in it - the rest of the plant, of which only 6%-10% is ldopa
2) it doesn't have a DDCI mixed with it
But the levadopa in it is IDENTICAL to the levadopa in a tablet. Like the vitamin C in an orange (C6H8O6) is identical to the vitamin C in a tablet. But obviously an orange has sugar and fibre and other stuff not in a tablet. So orange juice is a better hangover protector than a vitamin C tablet.
Your analogy about the orange is apt. I'd rather get my vitamin c from an orange than from powder made in a lab. That's just me. I don't actually think humans are superior to nature and can control it. I think we've made a huge mess trying to control everything. I also think PD is yet another piece of evidence that messing with the laws of nature, ie paraquat and TCE and countless other contaminants that cause many issues besides PD.
As for comparing with spiders, your wife has good reason to be afraid of them. Don't you agree? YOU don't have the same reason, so you're not afraid. Being afraid is not actually something you can argue with. You can tell someone not to feel a certain way all you want, and they may even tell you they no longer feel that way to get your approval. But only that person can change how they feel and only events or things that create that sense of safety for THAT PERSON, will make that possible.
I have witnessed enough people with dyskinesia to know that I want to do everything in my power to avoid it for as long as possible. Does this make sense? Telling someone they have nothing to be afraid of is not going to change their fear. Other things might, evidence, friends who don't have the issue, etc... but just telling them not to be afraid, and quoting a bunch of articles doesn't do it for me.
Am new to Levodopa for 2 months and also afraid of dyskinesia. My MDS told me that dyskinesia usually happens on those who take 400 mg per day or more. I also heard that taking B1 can help. Hopefully, stem cell is ready in 3 to 5 yrs and we can cut back on CL with less chance of dyskinesia.
Dyskinesia is caused by dopamine not levadopa. Well, an imbalance in the dopamine circuitry. As such it is one of the main potential complications of stem cell therapy. It was a significant problem in the first major clinical experiments carried out towards the end of the last century
I couldn't quickly find the reports of those trials, but this article covers the point
I'm recently diagnosed and was afraid too with everything being said. The main question to ask is can I exercise regularly without taking levodopa and if the answer is no then take some. I was really struggling and so finally took a low dose to help with my symptoms and now my symptoms have all improved. Exercise is the only thing that may actually slow the progression of PD and its a med free solution. Mucuna by the way is levodopa. Look for Prof Blom you tube video on exercise by no silver bullet. Its by far the best and clearest explanation of meds exercise and PD.
Do what YOU are comfortable with...you're the one who has to live with the consequences whether good or bad. (I agree with the above, find a different doctor.) It sounds as though you have no tremor?
I am non-tremor dominant, diagnosed with PD 2013. Initial symptom slowness and some stiffness. My movement disorder specialist said meds only treat symptoms and it was up to me but she recommended an hour of exercise every day. I now have poor balance with occasional falls, PD posture and gait and dozens of non-motor symptoms. While I'm not thrilled with the thought of dyskinesia I have avoided levodopa for a different reason. I know that what I experience is not from a medication side-effect. I value that clarity.
We're all different. If I were dealing with tremors I likely would have made other choices. Someday I may still choose differently but for now this works for me.
FYI: I have noticeable improvements in my stiffness when I take either glutathione or NAC daily.
Yes, no tremor . At the moment I am doing 3 times a week sessions with personal trainer è the other days walks of 1 hour. It helps a lot. Thanks for your reply.🙏
it's not just any old type of exercise that is thought to slow progression. any type of exercise does benefit in that it makes us healthier, as it does anyone else. But to slow progression, it must be HIIT. High intensity at least 3x/week for 45min sessions. It has to get the heart rate up to 85% of your max. I think that's the formula, but you can look into it. Hopefully your personal trainer is a exercise PD expert and does this with you?
Are we talking about Levodopa induced dystonia or dyskinesia? As far as I’m concerned, the reaction to Levodopa at the beginning would rather be dystonia , stiffness and cramps, not the dyskinesia type of movements. My right leg/foot reacted 6 months into the L-dopa regime, fairly low dose.
Hello, I was diagnosed 2ish years ago and I was getting pretty slowed movement with a right side tremor. My consultant suggested I should take Levodopa, as I found excising difficult. I started getting dyskinesia (mainly head bobbing) pretty soon after. My consultant has commented that he wouldn't expect me to have dyskinesia so quickly, good to know I'm unusual!
However, I actually prefer to have dyskinesia over feeling slow and useless, not saying that anyone is useless! Just how I feel when I am unmedicated.
I have these moments when I forget I have Parkinson's all together sometimes, and I tend to chase that feeling by constantly playing with dosage and timing, but a lot of it seems psychological to me.
If you are ok with your symptoms and you don't feel the need to take levodopa, you don't need to take it! I would say, it's not the place of your doctor or even your husband to 'insist' that you take it, it's a very personal decision.
If I didn't take "it," I'd be in trouble. I stopped taking it for 12 hours prior to my neuro appt, per MD instructions, and I wish to never go back to "that" feeling of the inability to move...like "glue" in my muscles.
I am wondering if you really have Parkinson's. I think there are other conditions that can cause similar symptoms. If you have not already done so, you might want to find a neurologist who specializes in movement disorders.
Here is a really excellent article titled, "Commons Myths about Dopamine Replacement." Written by Erick Ahlskog, a very trusted doctor who wrote THE book on drugs for PD. I avoided taking Sinemet until my gait problems started interfering with my ability to work out intensely. Started taking it and immediately got my power back. No regrets. But, I do have to make sure I don't take too much, otherwise I do get a bit wiggly.
I hear ya!! I felt the same way and was taking a ton of brain health supplements that helped a bit, but certainly not enough. I started taking CL almost a year ago and it was the best thing that happened to me! I am able to work part time again, etc. I also agree with a couple of people who mentioned that it was worth taking the risk. If you are having such mild symptoms, and it is not in any way inhibiting your life, I completely agree that maybe you cna at least hold off. I was like that for a while, but then as my symptoms progressed, I just knew I had to do something else. You will know if/when.
I have similar symptoms to you. I'm 4 years in and have recently started a low dose of sinemet. It's such an individual choice and people on this site will often feel quite strongly about using it or not. Don't feel pressured either way. My personal experience was that I was reluctant to start it but don't regret it at all. My movements are more fluid and I can dance again. Also I'm less breathless when I exercise. Peppermint tea cured the early queasiness which was my main problem. I'm still working on slowing progression with my lifestyle but it is giving me a better quality of life right now. Also, if you do start it, don't let yourself get rushed into a high 'one size fits all' dose. I've found the right dose with some experimenting. I guess time will tell regarding dyskinesia. All the best with your decision.
I resisted taking levodopa for awhile since I have very mild symptoms (like yours). But I read info that convinced me to try it, and after 2 weeks it 'kicked in'. I felt so much better! I wasn't even aware that I didn't already feel fine. I got more energy, f aster movements, and a lighter feeling. I recommend you try it. No downside!
I agree with you. It's your body and you have a right to make informed decisions. I received a lot of grief from people who thought they knew better that me about taking levadopa. My gut told me not to later. I learn that there are many side effects to the medication some of which are Parkinson's symptoms. I also learned that people who take the medication notice that after three hours and medicine has worn off, but they can't take another dose for another hour. So they have to put up with tremors for that one hour and it's extremely annoying. I decided that I was going to take a more healthy approach And get used to having tremors. My husband and children are very supportive of my decision. Other family members are not. Even if nobody was, I think it's important to follow your gut.
It's wonderful when everyone can pursue here their own interests and passions related to PD! Let me add Ahlskog’s to debunk some common myths about PD medication. Feel free in making your own choices regarding levodopa, but do so based on accurate information.
I was on low doses for about 2 years, but never liked the way it made me feel (edgy even if movement was temporarily better, and euphoric, which seemed like a red flag). I am working on getting off, a long and potentially dangerous journey.
I am an admirrer of the writings of Dr. Janice Hadlock who has a lot to say about the dangers of any type of levadopa therapy.
I take 1 mucana & 1/2 kinsome and if I take too much (take med too soon so I don’t get off time) I get dyskinesia . Drs have told me that too much levadopa causes dyskinesia.
I think stay off meds as long as u can but make sure u have quality of life.
Half or quarter a levadopa might be enough to improve yr slowness and keep doc and husband happy?? 😜
Please understand that this is my opinion only and not advice from my professional position.
I believe that levodopa is a useful drug, but must be managed well and used only when really needed.
Dyskinesia IS caused by levodopa and other PD drugs when prescribed unwisely.
I chose to not take any PD medication and fully recovered after 3 years, so it can be done. However, all my patients who have recovered did take levodopa for some time and most found it helpful.
My opinion is to delay using levodopa until you really need it, then take no more than a total of 400 mg daily (but start very low and increase very slowly) and always take Folinic Acid or Folate while taking levodopa to prevent hyperhomocystenemia.
My story of recovery is available on the internet - just search for John Coleman Parkinson's to get multiple hits. My autobiography is call "Shaky Past" available from Amazone for a few $
My main book is "Rethinking Parkinson's Disease" and available in many forms.
Hi,Do what you feel is best for you and your symptoms and don't be pressured into making any unwanted changes . If your symptoms worsen then you might consider levedopa but it's entirely your decision. Sinemet has worked for me over the past 7 years by reducing rigidity and tremors but I still have very severe nightmares , chronic muscle cramping, constipation , memory loss etc. So its no silver bullet .
I believe it's two schools of how to view levodopa.
1. It can cause Dyskinesias and avoid it or take as little as you can
2. Take it while you can, it doesn't shortening the time before you can get Dyskinesias.. but after a while with PD you can get Dyskinesias because you don't get the same effect in your brain from levodopa anymore....
My neurologists say nr 1 is old school.. so I take it while I can and enjoy life! But make no mistake, I do exercise 💪, but fast walking isn't hard enough for me too get som real exercise. Instead I play squash, soccer. nordic skiing ⛷️ and running. I believe 3x a week with 1 hour high intensity is the best medicine.
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