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Recurring hand tremors

Discussion in 'General ME/CFS Discussion' started by littlebird6180, Jan 24, 2017.

  1. littlebird6180

    littlebird6180 Senior Member

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    I've made a lot of improvements with my CFS/ME in the past year but I've had really extreme hand tremors that come and go. They get so bad at times, I can't text or even hold my phone that well. Magnesium sometimes helps and sometimes has no impact. Today, for instance, my hands are relatively tremor-free but I can't figure out why. Wondered if anyone else had any experience with this? Of course, my mind is going to dark places and I'm terrified I really have Parkinson's and have been misdiagnosed. It's really hard with ME to not always think the worst for me whenever I"m really having a bad time.

    In case it helps, here is what I'm taking:
    Atenolol
    Fludrocortisone (aka Florinef)
    LDN (admittedly have been really inconsistent with this lately because of a kidney stone episode where I needed narcotics)
    Ketotifen
    Niacin (500mg daily)
    Rhodiola Rosea (500mg daily)
    Folinic Acid (80mcg daily)

    and as needed or more occasionally:
    vitamin D
    Magnesium glycinate
    Potassium (rarely)
    b12 shots
     
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  2. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @littlebird6180 We aren't doctors here, but I'd like to pose a guess from online research.
    Most medical doctors have no training in nutrition. A very sad state of affairs.

    Currently an estimated 70-80% of the population in the USA is deficient in magnesium. Magnesium is like the key to the car, without it the car won't start.

    Your body is a biochemical manufacturing plant and magnesium is required for 300 known enzymatic reactions. Most magnesium stores are in your bones and places other than the blood, although the blood is commonly tested for magnesium. Thus one can be very deficient despite ok blood tests.

    Happily the body excretes excess magnesium through loosened bowels, so if that starts happening you know you have taken too much at once. It may be best to spread it out through the day with meals and also some at night. Magnesium has a calming effect and will help you to sleep at night.

    I noticed that you take a select few of the B vitamins. Not good. You need the complete B complex of vitamins so you don't end up with depletion of a required nutrient. Vitamins are vital substances that your body cannot manufacture. B vitamins are water soluble and are excreted by urine when in excess.

    A good quality multi vitamin/mineral would give you a starting base. Unfortunately good quality means a search since many companies sell forms that are cheap and largely unabsorbable.

    Your body needs vitamins and minerals on a daily basis. Depletion can be caused by disease, inadequate diet, and prescription drugs... The American diet is often lacking and drinking water stripped of minerals like magnesium during processing.

    Thiamine, B1, is very critical - the depletion of which is indicated in many diseases. As much as you may need thiamine, it will be useless without adequate magnesium on board. So I am happy to see you are getting some.
    However, it may take months to replete a magnesium deficiency, so do not expect miracles to happen over night. Your body will need to use that magnesium for many neglected processes.

    Click on these articles for details.

    Thiamine and magnesium deficiencies: Keys to disease
    www.sciencedirect.com/science/article/pii/S0306987714004393
    Thiamine and magnesium deficiencies: Keys to disease. ... High-dose thiamine as initial treatment for Parkinson’s disease.
    BMJ Case Rep (2013) [bcr 2013009289]
    Published in: Medical Hypotheses · 2015 Authors: D Lonsdale
    *******************************************************************************************************************************
    Deficiency in Magnesium and Vitamin B1 Can Cause
    Shaking Hands


    Symptoms of a low level deficiency of magnesium include
    muscle tremors and twitching along with irritability and
    excitability. More severe deficiencies also cause insomnia, leg
    and foot cramps and severely shaking hands.

    Many cases of
    muscle cramps are caused by low levels of magnesium. A
    1983 study led by Dr. L. Liu found that 500 mg of magnesium
    glucomate relieved muscle spasms in an adult female tennis
    player.

    Vitamin B1, also known as thiamine, is essential for nerve
    stimulation as well as for the metabolism of carbohydrates
    that provide the brain with energy. B-vitamins reduce
    shakiness by calming the nervous system.

    Nerve cells require vitamin B1 in order to function normally
    and vitamin B-1 deficiency, while rare, can cause shaking.

    Foods rich in
    magnesium include dark leafy greens such as
    kale or spinach (each of which provide about 20% of the
    daily recommended amount of magnesium), pumpkins seeds
    (137% of the daily recommended amount) and most nuts.
    *********************************************************************************************************************
    Magnesium For Kidney Stones: The Power Of Prevention
    www.mymagnesiumdeficiency.infoMagnesium Benefits
    Kidney stones can be extremely painful. Learn ways to prevent them from forming, including taking magnesium for kidney stones.
    *************************************************************************************************************************
    Nutritional Brain Bomb: Thiamine Deficiency
    https://www.psychologytoday.com/blog/evolutionary-psychiatry/...
    Nutritional Brain Bomb: Thiamine Deficiency. Vitamin B1 is essential for proper brain energetics. ... 100 mg thiamine, magnesium, and a multivitamin solution.
     
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  3. belize44

    belize44 Senior Member

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    I get this shaky hand thing too. I take plenty of magnesium; especially Taurate and Citrate. I was severely deficient about four years ago, until I read the book The Magnesium Miracle; it saved my life. It took about six months of Magnesium Taurate supplementation along with Magnesium oil and Magnesium Citrate until I started getting loose stool, which told me to back off. I also take a quality multivitamin, along with a plethora of other vitamins supplements. I think my hand tremors are being caused by something else though. I hope you find some answers!
     
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  4. Kati

    Kati Patient in training

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    It's funny how people love to give advice on vitamins and supplements when patients have issues that needs to be addressed in a medical office first.

    @littlebird6180 your tremors are worthy of a doctor visit to rule out the most important stuff. What works for one may not work for the others, and someone's pathology may be quite different than the other. We know that Me is fairly heterogenous. There may or may not be overlapping pathologies.

    Also, someone's tremors at age 70 may not stem from the same cause than someone who develops them at age 35.

    So having a doctor who oversees your particular case is good to have, and presenting him/her with bothersome symptoms such as being unable to hold your phone or text is worthy of paying him/her a visit.

    Sending best wishes
     
    Last edited: Jan 26, 2017
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  5. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    I second what @Kati said, and recommend that you also video your tremors and any other unusual symptoms and show the video to your doctor. It is very helpful if they can see your symptoms.
     
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  6. littlebird6180

    littlebird6180 Senior Member

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    Thank you to everyone for your reply. I have a call into my ME doctor.

    This has been going on for a while and my ME doctor closely monitors my blood levels of everything. Anyway, I'll keep you posted on what her response is.
     
  7. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @Kati Lighten up there. No one said she shouldn't see a medical doctor and I'm all for it. However, since you won't get nutritional advice from most MD's, I kindly took the time and effort to share some research in this matter, some of which you will find deep in PubMed studies. I certainly hope some one would be as kind with me in such a scenario.
     
  8. littlebird6180

    littlebird6180 Senior Member

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    Just wanted to update that I spoke to my doctor. She said that I should try some tonic water to see if that helps but she also wants me to have a work up by a neurologist to see if my nerve pathways are being obstructed.
     
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  9. Kati

    Kati Patient in training

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    Lighten up? This is no joking matter. People with chest pain should not be told to take more calcium or told it's costochondritis. People with chest pain should see their doctors or go to emergency.


    You said 'no one said she shouldn't see a medical doctor' did anybody before me said she should, including you?

    This may not be about nutritional advice. It could stem from many different things that need to be explored before deciding/suggesting she is calcium or magnesium deficient.

    You are giving advice without knowing the whole medical picture of the person you are advising to. Thread carefully.

    I am tagging @Sushi and @Kina here in their moderator role.
     
    Last edited: Jan 25, 2017
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  10. Kati

    Kati Patient in training

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    Best wishes @littlebird6180
     
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  11. Sushi

    Sushi Senior Member Albuquerque

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    Since the question of "giving medical advice" is sometimes not understood clearly on our forum, I'd encourage members to read Phoenix Rising's rule (rule # 5) on this topic. There are good reasons behind it: 1) It is not legal to give medical advice on an internet forum--it is practicing medicine without a license. 2) we can't possibly have the full picture--even our M.D. members cannot give such advice.

    From Phoenix Rising's rule on Medical Advice:
    The best choice in replying to someone who posts about their medical condition is, (if you have experience with something similar) to share your own experience. Or, you might wish to share a link or cited quotation from medical literature that you think is relevant. What to avoid is using "active verbs" such as "you should, you need to," etc.

    Thanks.
     
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  12. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    Like I said, we are not doctors here. I'm glad you are checking out possible causes with doctors and are aware of Parkinson's. I hope you find some good doctors.

    I had bad tremors for over twenty years. I sought help and diagnosis from medical doctors. They usually just dismissed it saying that it sometimes happens - begging the question why. Of course they indicated to me that they weren't sure why that it could be any number of causes and could be related to diseases. This went on for twenty years.

    At one point I had a minor stroke and they finally sent me to see a highly esteemed neurologist....earliest appointment was two months after the stroke. Within about 5 minutes of the start of my appointment, without any testing or exam or discussion about possible causes of the tremors and stroke, the neurologist recommended that I take drugs, anti-epileptic and other. I left with an Rx which I did not fill, after checking out the drugs he prescribed online which looked like they would just cause further problems from reading their side effects and contraindications - none of which the doctor covered.

    None of these doctors ever thought to check for a nutritional deficiency which could be deadly if it progressed.

    I decided to look up more about the neurologist and was shocked to discover that about 5 years earlier he was involved in a very bad incident, but he is still in practice:
    Physician accused of faulty care of his wife | The San ...
    legacy.sandiegouniontribune.com/uniontrib/20060125/news_7m25doctor...
    Physician accused of faulty care of his wife. ... If the accusations are proven, Dr. James Grisolia, chief of staff-elect at Scripps Mercy Hospital, ...

    Physician's negligence results in probation | The San ...
    legacy.sandiegouniontribune.com/uniontrib/20071217/news_1m17doctor...
    Physician's negligence results in probation. Faulty prescriptions led to his wife's fatal overdose. By David Hasemyer STAFF WRITER. December 17, 2007

    This highly esteemed doctor is still in practice.

    I wish I had not waited to research the nutritional deficiency PubMed studies and but early on I did not have a computer.

    I have been taking supplemental magnesium now for six months, around the clock, along with a complex of B vitamins. Guess what - my tremors are largely gone! This of course may not be what works for you, I am not a doctor.... I just hope you do your own research.
     
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  13. littlebird6180

    littlebird6180 Senior Member

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    Hi everyone,

    I just want to say a few things...

    First, I'm very fortunate to see one of the leading ME doctors out there who practices in south florida. So, I do feel I'm in great hands and she keeps very close tabs on all my levels and deficiencies. I admittedly struggle at times to keep up with the extensive protocol and the expensive supplements but I have gotten markedly better (healthier) in the past year to a point I feel like I have a life again.

    Second, I can only speak for myself but I don't ask questions like this casually and I take my condition extremely seriously...meaning, I read and research about everything. I only introduce one new supplement at a time and monitor the effects and I explore things from all angles.

    So, I came here to ask the community because I find that it often gives me a great starting place in terms of what to bring up to my doctor, what to read about and explore further and to be sure I"m considering all angles. I appreciate all the responses I got and didn't feel anyone was discouraging me from seeing my doctor. I felt it was more supplemental advice which is what I was looking for. I can understand though how other newcomers who don't have access to good doctors may blindly follow whatever they're told here (although in a way, if I didn't have the doctor I did, the advice here is pretty incredible)

    I do also greatly appreciate the alarm and seriousness raised by others because I think my tremors have gotten to a point where I need to take them that seriously. It can be really hard as an ME patient to prioritize symptoms to address - from bladder issues, body aches, memory loss, brain fog, tachycardia, dizziness, migraines...it can begin to feel like I spend most of my life at the doctors. And sometimes (as I'm sure you all know) treating one thing leads to side effects that negatively impact others. So hand tremors was low on my totem pole but now that it's gotten so extreme, fear has really set in.

    I spoke with the neurologist today and have an appt scheduled for 2/16 - while I think it's important to have the workup, I will defer on my ME doctor on how the results get interpreted more than the neurologist.

    Anyway, thanks again. I'll try and remember to check back in with the results once I have them all.

    Lastly, wondering if anyone thinks hand tremors of this degree are a sign of parkinsons (I say that knowing full well nobody here is a doctor - and I plan on asking my doctor but just in the interim would love some personal perspective)
     
  14. littlebird6180

    littlebird6180 Senior Member

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    Argh, I went ahead and read the symptoms of Parkinson's and am now genuinely very scared. I have almost all of them...
    Stiff muscles, sleepiness, fatigue, dizziness, memory issues, anxiety, loss of smell, leaking urine, and of course tremors...

    Not sure what to do with this information. How can doctors differentiate b/w ME and parkinson's?
     
  15. Kati

    Kati Patient in training

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    Hi @littlebird6180 the best you can do is to see a neurologist who will perform the necessary tests for you, and hopefully give an accurate diagnosis.
    I am so sorry you are going through this health scare.
     
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  16. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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  17. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    So far as I can see the symptoms described bear no relation to Parkinson's disease. They may sound like the symptoms in the book but someone with Parkinson's disease is very unlikely to describe things this way. They tell a quite different story. The picture does not sound in any way like magnesium deficiency either. There are lots of common reasons for tremors and a neurologist can advise. Probably the commonest tremor on trying to do things is benign essential tremor.
     
  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Some people here seem to be a little tactless, to be honest.
     
  19. TigerLilea

    TigerLilea Senior Member

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    I was going to recommend getting an appointment with a neurologist so I'm glad to see that you have one already. This doesn't sound like ME/CFS so I don't think that deferring to your ME doctor would make sense in this case.

    The interesting thing is that one of the meds you are taking, Atenolol, is actually used for hand tremors, so the fact that you are having hand tremors while on this med could be concerning.

    Do you take muscle relaxants or anything with acetaminophen (Tylenol) in it? Especially in large quantities? I know someone who developed hand tremors from unintentionally over dosing on acetaminophen. Just because something is "over the counter" doesn't mean that it doesn't have side-effects? And I often wonder what damage people are doing to themselves when they go overboard on the vitamins, minerals, and supplements. Causing an imbalance in our bodies vitamins and minerals surely must come at a cost.

    Good luck with your appointment and I hope that the neuro can figure out what is causing them for you and that it is a relatively easy fix. :)
     
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  20. littlebird6180

    littlebird6180 Senior Member

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    Thank you Jonathan. I really value this coming from you. I sometimes lose faith in the ME diagnosis out of fear I may be missing something else. Probably a result of years of doubtful and dismissive doctors that always has me second guessing everything.

    If my memory was better, I could better pinpoint when these symptoms began. The tremor seems like it's been around for a year, maybe two but it's gotten significantly worse in the past couple months. The biggest differences in the last year is that I started the beta blocker and fludrocortisone (and I got a Loop recorder implanted in my chest). The tremor is the same in both hands.

    Anyway, as I said, I'll post back once I've had the neurology work up. My ME doc said the key is determining whether this is muscular or nerve related before figuring out how best to treat it. It's certainly hard having two little kids and having ME, let alone feeling (at times) like they have to see my hands shaking so much. My oldest (age 6) is always worried about my health so symptoms I can't hide from her are the worst ;)
     
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