This what my neuro dr. told me today

1. C/L long use is causing dyskinesia - nonsense; dyskinesia is caused by the advanced PD - not enough cells to store/produce dopamine left; he urged me to start C/L asap.

2. Proteins slow down the C/L absorption - nonsense; actually is the alcohol which does it.

3. Parkinson is a nonhereditary disease - nonsense; it goes back 5 generations and my son has 5-10% chances to get it; eating organic or certain diet (no gluten, no sugar etc.) is nonsense; the pesticide contaminated foods like non-organic apples are peaches have nothing to do with PD

4. Natural Supplements help - nonsense; they make PD worse.

5. Alternative ways (acupuncture, chiropractics, etc.) - waste of money;

6. Exercising - the single one which may slow down PD

He told me that before C/L (1967) all PWP were fully disabled in 3 years and dead in 5.

I want to hear your ideas about all of these.

Thank you.

62 Replies

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  • 1- OK ; 2 - B6 does; 3 - OK ; 4 - B1 allithiamine helps me; 5/6 - OK ; 7 - before modern meds pwp suffered terribly

  • Above I posted the doctor statements, not mine.

  • On M. Fox website is stated that only 15-25% of PWP inherited it but the doctor said that all people get it through genetics.

  • That statement Is clearly false - Permethrin exposure trebles Parkinson's risk. So genetics is not the only cause. See here: Parkinson's and Pesticides tinyurl.com/y8tckmx4

    That covers #3. As to the other items:

    1.MD is quite correct: "We conclude that motor fluctuationsand dyskinesias are not associated with the duration of levodopa therapy, but rather with longer disease duration and higher levodopa daily dose. Hence, the practice to withhold levodopa therapy with the objective of delaying the occurrence of motor complications is not justified." academic.oup.com/brain/arti... This study holds, unless and until a more recent study validly refutes it, which to my knowledge has not occurred.

    2. It is undisputed, except by the this M.D., that protein slows levodopa absorption. So, wrong.

    4. NAC Has been shown to improve the neurological status of PWP. See here: journals.plos.org/plosone/a...

    So, wrong. Doctors are propagandized to believe prescription meds can do no harm and supplements can do no good. This is a false belief. Details here: When Good Doctors Prescribe Bad Medicine tinyurl.com/zvgcu79

    5. Not beneficial for PD as far as I know. So, possibly correct.

    6. No question exercise is helpful.

  • Hi there park_bear

    I have read the article about Parkinson and pesticides and there are many inappropriate findings in the article and the articles included to support the information.

    The article is based on the belief of the writer only. There are no study groups to back up the information which are recent most of the information is around 10 years old and those that are not do not say where all the stats came from to reach their conclusions. It looks like the article is derived from a whole lot of other articles put together and the assumption of what the writer has expressed how the drugs are affecting him. Part of a study findings have not been tried and tested on humans. The article itself is not written by a .gov site or by a clinical researcher where the study can be duplicated and the same findings found following a new study of the same conditions etc. Please please be careful where you base your information from look for published articles from reputable studies.

  • I wrote it very carefully and fully referenced to peer reviewed journal articles. If you have a specific refutation rather than random blathering let's see it. Put up or shut up.

  • I want to be sure I understand which one of you is saying "nonsense" to the statements? Is it you or him, for example, that is saying dyskinesia is not caused by long-term use of C/L, but instead, is due to PD progressing? Or, are you or your or Dr. saying that natural supplements make PD worse?

    Prior to your answer, I'll proffer that there are many PWP who take Sinemet for long periods without increasing the dose, but for the vast majority, long-term usage necessarily involves increasing the dose which induces dyskinesia. That is not to say that some PWP experience dyskinesia without ever having taken Sinemet. However, few people would disagree that long-term, ever-increasing dosage of C/L induces dyskinesia.

    Oxidative stress and inflammation are widely recognized issues in PWP and the more advanced the progression, the more they are issues. Food, compounds, and supplements which mitigate oxidative stress and inflammation are helpful. Supplements are a subset of food/nutrition. Some foods make some symptoms worse, but those of us who research PD and supplements do so to address oxidative stress and inflammation. A blanket statement that supplements make Parkinson's worse is ignorant, because it is pretty much the same thing as saying that,"food/nutrition cannot be beneficial ..."

    Perhaps the most obvious example is; constipation is a problem with most PWP. All persons who walk the earth agree that some foods exacerbate constipation. Therefore, what you eat matters and to say otherwise -- is, how can I put this delicately, plain stupid.

    I regret having to be blunt, but your Dr. sounds like he has a bad case of arrogant -itis.

  • The doctor said nonsense. I just reproduced what he said.

  • your doctor is absolutely right it is NOT the CL that causes dyskinisia with long use it is the progression of the disease.

  • Thank you for your reply.

  • I would appreciate if more people reply with information from their doctors or their experiences. Based on what I read on this forum or other sites there is a contradiction with what my doctor told me today.

  • My neuro also told me that l dopa does not cause problems - it is simply that the body produces less and less dopamine.

    On my last visit he actually mentioned excercise and also told me to ditch my husband as he's causing me a lot of stress!

  • How can somebody say something like that? I think it's awful

  • arwenmark & Astra7,

    I think it's widely accepted that increased doses of L-dopa over a long-term induces dyskinesia.

    en.wikipedia.org/wiki/Levod...

    ncbi.nlm.nih.gov/pmc/articl...

    From the Michael J Fox Foundation; video setting forth their official position.

    michaeljfox.org/foundation/...

    “Dyskinesia typically occurs as a complication of long-term levodopa use. Additional factors that may contribute to dyskinesia include a younger age at diagnosis and the use of higher doses of levodopa for extended periods of time.

    … Fluctuating levels of dopamine in particular are thought to play a role. … Levodopa temporarily restores dopamine, but because it has to be taken several times per day, dopamine levels rise and fall. This, combined with progressive loss of the dopamine-producing brain cells, makes it impossible to keep a constant level of dopamine in the body and brain, and these fluctuations are believed to contribute to dyskinesia.”

    "Because of the potential for dyskinesia with long-term use of levodopa, many people, especially those who are younger at the time of diagnosis,… "

    michaeljfox.org/understandi...

    michaeljfox.org/foundation/...

    michaeljfox.org/research/pr...

    July, 2017, from the Science of Parkinson’s

    scienceofparkinsons.com/201...

    “Because dyskinesia is one of the most debilitating effects of levodopa therapy, …”

    nejm.org/doi/full/10.1056/N...

    “Although levodopa is the gold standard for treating motor symptoms of Parkinson’s disease (PD), long-term therapy leads to levodopa-induced dyskinesia (LID).”

    link.springer.com/article/1...

    “Levodopa-induced dyskinesias (LID) belong to the most common dose-limiting adverse effects of levodopa therapy. … The majority of patients will have developed dyskinesias after 10 years of treatment, and about 40–50% after 5 years. Occurrence of LID appears to be related to dose and duration of treatment with levodopa and severity and duration of disease. In addition, patients with younger age of onset have been reported to have an earlier onset and higher rate of LID.”

    content.iospress.com/articl...

    link.springer.com/article/1...

    "Over the past 4 decades, levodopa has emerged as the most effective symptomatic treatment of Parkinson disease (PD).1 Levodopa has a higher efficacy and fewer side effects than all other currently available antiparkinsonian treatments, but a majority of patients develop dyskinesia after a few years of treatment."

    n.neurology.org/content/72/...

    nature.com/articles/srep03730

    hindawi.com/journals/pd/201...

    from Parkinson’s News Today

    parkinsonsnewstoday.com/201...

    etc., etc.

  • What is your opinion on this study then MB Anderson?

    healthunlocked.com/parkinso...

  • That long-term use of C/L does not induce dyskinesia, but that increasing the dose does - which I have been careful to say.

    Even though I am careful to say it is the increased dose, most of the studies say it is the uneven administration, that is, the up-and-down spikes. Despite this study, I go with the consensus of studies that long-term use of immediate release C/L induces dyskinesia, although I keep that opinion to myself.

  • As you probably know, Dr. Okun is a well-known and published professor at the University of Florida, Gainesville and the Chair, Department of Neurology, Co-Director Movement Disorders Center Departments of Neurology, Neurosurgery, Psychiatry and History. He is also the National Medical Director of the Parkinson’s Foundation

    Here is the link from the National Parkinson's Foundation where Dr. Okun provides answers to 35 pages of questions mostly about dyskinesia.

    forum.parkinson.org/search/...

  • Hikoi, How do you feel about there being just this one study which draws this conclusion?

  • Thanks for posting all those links. Very interesting. I find it so frustrating that the medical profession has no agreement on this fundamental issue.

    I wonder why we can't be given slow release l dopa though if the dopamine fluctuations may be part of the problem. I'll have to ask the neuro in feb. Meanwhile I take as little as possible to get by.

  • There is an extended release Sinemet which mostly resolves the problems from the up-and-down spikes. Also, there's a lot of positive feedback on these forums about the duo pump because its purpose is to release a consistent dose throughout the whole day. The drawback is, of course, it has to be permanently attached to your body. We have a family friend who is a medical doctor whose was taking lots of Sinemet pills (I think 15 or 20 per day) and recently switched to a duo pump and loves it.

  • The pump looks like a good option for later down the track. Meanwhile I'll ask about the sinamet. I just wonder why it's not given straightaway. Maybe it's too pricey or something.

  • If you have mentioned your husband causing a lot of stress to you to the Doctor then maybe he is. But whether ditching him would cause you more stress is another question. I only mention this, because my mother's best friend died from Parkinson's after having married a bullying sociopath ( who was actually a doctor).

  • More of a controlling narcissistic type. My family believes he has caused my PD and want me to leave him, but it's all so stressful either way. I've found a lovely counsellor to help me though and I hope to improve my environment either way.

    I was very surprised by my neuro though - he's just a serious man and this flippancy was unexpected!

  • If your family and your neuro think this, then it certainly is worth considering. You need to work out the end-goal, but if your symptoms deteriorate is he going to leave you anyway?

    I had a business relationship with a narcisstic personality disorder person - the only thing I can stress is to get as far away from them as quickly as possible - they put you through hell. And as for being married to one - that is even worse.

    Anyway I need to get down to the gym to do my 45 minutes of somewhat intense cardio.

  • And the world is flat. Wow, this neuro must be written up in at least several journals as the definitive authority on All Things Parkinson. What I find most disturbing about his remarks is the colossal lack of open-mindedness & curiosity he appears to display. I was diagnosed with Early Onset PD at the age of 49. I am now 67. I've learned that the best doctors are usually to be found in or near teaching hospitals, where research thrives and hope is kept alive. Not everyone has such options, in which case I'd suggest looking for a neuro who understands there's no one absolute protocol for how to treat PD. There are "mosts" and "usuallys" but each person is unique in his/her relationship with this disease.

    It's up to YOU what that relationship will be. Will you choose the bleak conclusions of your current neuro, or will you be like MB Anderson? Just look at the info he's offered you! Look at how many sources he's accessed in his desire to learn! He's framed his relationship with PD in an involved, positive way. We'll all die of something. It's the choices we make about how we design the journey that defines us in the end.

  • I agree with you. I saw this doctor first time in August when he told me I have PD after two before told me I had ET. But he did like a robot, cutting me short for everything I tried to say.

    He put me on C/L and told me to come back in October. But I cancelled the appt and went to another doctor which confirmed the diagnosed but he did very nice. I told him about my concerns regarding dyskinesia and he agreed to postpone it as much as I can; he gave me amantadine to take for tremor if I needed. There is a big behavioral difference between them.

    Ironically, the first doctor has a degree in psychology ,too.

    After I saw him two times I felt pretty bad because I felt very stressed. Last time he said: "what you chose between taking C/L or dying?". He was upset I did not take the medication right away after the first appt. I told him I needed time to accept the situation, to do a study myself. It did not make sense for him.

    Now I made another appt to the second doctor, the nice one. But I have to wait till mid March while for the fist I can get an appt in a week. Not too many people there. It seems pretty hard to work with this guy. Everything is not said in medical books is NONSENSE. I told him about research articles on the net, about MFoxF, about people on this forum .... everything is nonsense. He just want someone to blindly follow his instructions.

  • Wow 19 yrs. how did you manage PD all these years? What Meds are you on from age 49 till now? Exercise? Supplements? What are your symptoms?

    Thank you for your response.

  • I, for one, want to thank and express my appreciation to everyone who participates in these discussions. We have different doctors who differ in their own opinions and we read different material, but my reading other people’s differing positions is, I feel, the most valuable content. Without opposing opinions, we would learn very little from each other.

    Some PWP who have never taken C/L therapy get dyskinesia.

    Some PWP who have taken C/L therapy over a period of several years have not needed to increase the dose and have not gotten dyskinesia, while others have.

    The vast majority PWP who have taken C/L therapy over a period of several years have needed to increase the dose and have gotten dyskinesia.

    For all intents and purposes, there are no people who have taken C/L therapy over the period of several years who have had to increase the dose (and I am referring to 1000 mg or more) and have not gotten dyskinesia.

    I see little reason to figure out whether or not immediate release C/L therapy causes dyskinesia when continuous releases is available. The reason the duo pump is so effective is because it supplies a slow, constant stream of L-Dopa, precluding the ups and downs of available dopamine.

    None of us choose therapies because they are effective for a minority of PWP, but because they are effective for the majority.

    I am the first to admit that for every study that reports one thing, we can find another study that says the opposite, but I feel that is not the case regarding the cause of dyskinesia because for each study like the sub-Saharan study, (which I agree is a competent, authoritative study and one that gives me pause) there are 40 or 50 studies, and probably a lot more, which conclude that in a majority of PWP, long-term use of C/L therapy induces dyskinesia.

    So the question before each of us is, what is the probability that I can take Sinemet at a consistent and relatively low dose indefinitely and also be one of those that do not end up with dyskinesia?

    I do not mean to discourage anyone from taking Sinemet or not following their doctor’s advice. Sinemet has been savior and God’s send for hundreds of thousands of people. For myself, personally, until I see a large body of studies that duplicate the sub-Saharan study, most studies, and the consensus among prominent authorities is, long-term use of C/L therapy, regardless of the precise cause, results in dyskinesia in a majority of PWP.

    Therefore, for myself, I have decided to take as little Sinemet as possible for as long as possible. I fully expect that over time I will have to increase the dose and when I do, I will increase it as slowly as possible.

  • After a long time resistance, I admit my neuro is correct. C/L ER is necessary to my quality of life. Not that he is right in all opinions. For instance he says my declining lung function is not due to P, yet my GP doc uses medical code, lung condition result of PARKINSON.

  • I am the outlier to all you have posted. I developed dyskinesia after four months on less than 300mg daily. After 6 months I went off c/l for almost a year. Although I had no dyskinesia I was about 70% debilitated with bradykinesia, dystonia and other symptoms. I have been back on c/l for 2.5 years now with dyskinesia almost the whole time. I currently take 200-250mg daily. I take my last half pill between 4-5 pm and go through a very uncomfortable 30-60 minutes of intense dyskinesia and then I am slow, but functional. I also have dyskinesia Throughout my med cycle. Not meaning to hijack this thread, just sharing information.

  • Juliegrace,

    You certainly are not hijacking the thread. I'm sure everyone appreciates and benefits from hearing your story. Thank you for sharing it. I believe quite a few people share your experience. I'm sorry you've had such a hard time. It's a dreadful illness. I hope you are able to find some joy among all the pain.

  • Thank you. I struggle, but have a very good life. I would not trade the life I have to not have PD.

  • Have u tried Amantadine ?

    It seems to have helped with my dyskinesia

    I'll also be restarting CBD oil

    Once I began using it regularly it too helped

    But I ran out & need to renew my license next wk

    I hope this may help u

    Be well

    C!

  • I am reluctant to start amantadine given the mixed reviews and bc I am so sensitive to meds.

    I have tried many mj products with no significant benefit, but I appreciate the suggestions.

  • Juliegrace,

    Your case reminds me a little of my own experience.

    A couple of years ago, in an attempt to improve my tremor a bit more, my neuro increased my Madopar 125 dosage from half a tablet 3 times a day to one tablet 3 times a day. About half an hour after taking the first full tablet I developed dyskinesia in my right foot, which lasted for about one hour. The same thing happened after each dose of one full tablet. I changed the dosage to half a tablet 6 times a day and the dyskinesia stopped happening. My neuro has since increased my dosage to three quarters of a tablet 6 times a day, and the dyskinesia has not returned.

    Taking three quarters of a tablet 6 times a day may seem arduous, but I have taken steps to make it a bit easier. The first thing was to set up 6 alarms on a smart phone to signal when the next dose is due. The second thing was to buy a multi-compartment pill container, and to fill it with 6 doses each evening, ready for the next day. Thus all the pill cutting is done just once per day, and for this I have a good quality pill cutter. It also helps that my Madopar 125 tablets are double scored.

    So, now to the punch line! Assuming you've not tried this already, I think it might be a worthwhile experiment to try taking your 200mg as one quarter of a tablet 8 times a day. If this stops (or even significantly reduces) your dyskinesia, you could then explore with your neuro what new options this presents.

    Jeff

  • I have already tried this. For a long period of time using 1/4 of 25/100 c/l. Recently I switched to 10/100 c/l which has allowed me a little longer between dose and some slight relief from dyskinesia.

  • MBAnderson said: "... until I see a large body of studies that duplicate the sub-Saharan study, most studies, and the consensus among prominent authorities is, long-term use of C/L therapy, regardless of the precise cause, results in dyskinesia in a majority of PWP."

    I don't see the sub-Saharan study as being in conflict with these other studies. The sub-Saharan study demonstrated that if you get diagnosed with PD but do not start C/L therapy until 5 years after being diagnosed, the progression of the disease during those 5 years will cause you (on average) to get dyskinesia relatively quickly once you start the C/L therapy. I don't see the sub-Saharan study as disputing the consensus that long-term use of C/L therapy results in dyskinesia in a majority of PWP. I see the sub-Saharan study as simply helping to explain how (part of) the process actually works.

    MBAnderson said: "Therefore, for myself, I have decided to take as little Sinemet as possible for as long as possible. I fully expect that over time I will have to increase the dose and when I do, I will increase it as slowly as possible."

    Underlying this strategy seems to be a concern that C/L therapy might actually accelerate the progression of the disease. On the contrary, there seems to be some evidence that C/L therapy is (slightly) neuroprotective.

  • Some time ago I’ve was reading studies that said both it accelerates progression and others that said we’re better off starting C/L therapy early, so I asked the neurologist at the VA that I am seeing and he said the jury was not in on the question. A couple years ago I was having a videoconference with a neurologist in San Francisco that was screening me for DBS and she said people are better off if they start C/L early, so I have remained ambivalent. Do you have any of those links available that show it might be neuroprotective?

    So, my strategy is not based on a firm belief that it accelerates progression, even though that fear lurks in the back of my mind, as much is it is that I feel there’s a high probability that long-term usage induces dyskinesia.

    I’d appreciate it if you can put me out of my misery on this issue.

  • Regarding the issue of whether C/L therapy is neuroprotective, the paper(s) I had in mind relate to the ELLDOPA study, although the results are generally regarded as mixed.

    You say: "I feel there’s a high probability that long-term usage induces dyskinesia". I agree, but I would never put it that way myself, because, to the casual reader, I feel it implies, incorrectly, that shorter-term usage would probably not induce dyskinesia. The sub-Saharan study clearly demonstrated that long-term disease progression plus short-term usage also induces dyskinesia. The reason that long-term usage (very often) induces dyskinesia is precisely because long-term usage implies long-term disease progression.

    The dyskinesia clock is driven by disease progression, and this is true despite seeming outliers like the case of Juliegrace, and my case also. The only way to stop the dyskinesia clock is to stop the progression of the disease (or to slow the dyskinesia clock by slowing the progression of the disease). Thankfully, ways are starting to emerge for achieving this (e.g. certain forms of exercise, certain supplements (maybe), certain antigens/antibodies (maybe)).

  • Jeffreyn,

    You've written a fine summary of a complex process and not consistent findings. Thank you.

  • Thank you for this

  • Well stated Jeffrey. Your answer is clearly in line with the latest research. The single best predictor of dyskinesia (keeping in mind that not everyone gets dyskinetic) is length of time with the disease, NOT the amount of levodopa. As you stated, length of time is obviously also correlated with the amount of levodopa taken.

  • Hi Tupelo3,

    Yes, the common mis-understanding probably stems from the complexity inherent in there being three things going on, and not just two things. It is obvious to everyone that levodopa is being taken over a period of time, and that dyskinesia is occurring after that same period of time. What is commonly ignored is that the disease is also progressing over that same period of time.

    As you know, the importance of disease progression became clear when the sub-Saharan study gave levodopa to people who had many years of disease progression (but no prior treatment with levodopa) and then observed how (relatively) quickly they experienced dyskinesia.

  • I'm new to this forum and I just dived into a bout of google scholar research, where I found the sub-Saharan study. I'm so happy to be reading opinions which treat it (and other stuff) respectfully, but critically.

  • I do believe that those who praise DBS do so because it reduces the need for dopamine there by the worries of dyskinesia.

    P.S. it is time to add dyskinesia into a medical sites spell check.

  • ask him what he thinks about megadoses of coconut oil. just for laughs.

  • I think we have the same dr.

  • You need a new neurologist. Since symptoms began I have seen 9 neurologists (I participate in research and one retired) and although some have been less than enthusiastic about alternative or complementary treatments, none have been dismissive. And ALL have known that dyskinesia are caused by medication. I have not read all your comments, you might have already answered this, but where are you located?

  • I was asking ion_ion.

  • I'm located in Michigan, 30 mi North of Detroit.

  • one of the best HealthUnlocked researchers; from Silvestrov

    21 videos - a must watch, particularly for this thread

    vimeopro.com/user60766261/r...

  • My husband was having dyskinesia, the doctor lowered his dose of C/L and the dyskinesia went away.

  • After reading all the comments (Thank you everybody!) I'm still in dilemma: To start or not to start C/L!?

    I'm still working like software engineer writing software for machinery and I'm afraid of getting dizzy or get other side effects before reaching the moment for dyskinesia which could be years from now. If I knew I had no side effects I would start right now. But probably I'll keep postponing and do exercising, eat onion and drink beer before going to bed which actually help a lot.

  • You are doing fine. You will know when it is time to start. Start C/L ER at the lowest dose that works for you.

  • ion_ion,

    From what you've said earlier, I get the impression that tremor is your main symptom/concern at the present time. Unfortunately, as a number of us have experienced, C/L therapy seems to be less effective against tremor, compared with, say, against slowness of movement, or stiffness.

    You also said earlier that your second neuro prescribed amantadine for your tremor. I've not tried it myself, but a number of people have reported some success with amantadine for tremor.

    You also mentioned dyskinesia, so this is obviously still a concern of yours, when in fact it should not be. To add to what I've said before about this, the bottom line is that your dyskinesia clock is already ticking, as it is driven by disease progression. Whether you start C/L therapy now, or you start in 5 years time, you will not change the date at which you start to experience dyskinesia (if you are going to experience it at all - not everybody does). Of course, if you never use levodopa, you will never experience Levodopa-Induced Dyskinesia (LID), but in that case you will also never experience the symptomatic relief that levodopa provides.

    Jeff

  • jeffreyn

    Everything you said makes sense. Probably I'll start C/L sometime but for now is only the right hand tremor with bother me when I'm under stress. Otherwise I'm almost normal. I know C/L may help tremor but I'm afraid of other immediate side effects like dizziness and nausea which may have impact over my work efficiency. The doctor told me to start C/L "yesterday" as it is slowing the progression. Not sure if that is true.

  • Your case seems very similar to mine. Tremor (right side, particularly right hand) is virtually my only symptom. It is often not present, but can happen fairly quickly when I'm experiencing stress.

    On the question of whether levodopa is neuroprotective, it seems that the jury is still out. The ELLDOPA study looked at this some years ago, with seemingly mixed results. I'm not aware of any current trials that are investigating this issue.

    Regarding your concern about possible side effects of Sinemet/Madopar (dizziness and nausea), it makes sense to start slowly and work up to the prescribed dose.

    My neurologist started me on the Madopar 100/25 tablet according to the following schedule:

    ................Breakfast Lunch Dinner...................

    1st week: quarter quarter quarter (after meals)

    2nd week:half half half (after meals)

    3rd week: full full full (after meals)

    4th week: full full full (half hour before meals)

    5th week etc: (same as 4th week)

    In answer to a question from me, he said that if my symptoms disappeared part way through this schedule, I could just stay on whatever dose that was.

  • So you did not encounter any side effects with this schedule? Did the tremor stopped?

    Thank you.

  • Yes, that's right, I followed this schedule and I had no problems.

    No, the tremor did not stop, but it did get weaker. I'm now doing other things as well, and they are also helping. If you'd like to see my current medications, supplements, and exercise routines, just click on my name.

  • Nonsense

  • Propranolol is suitable for tremor

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