• amyb

    Member
    February 2, 2022 at 3:29 pm

    Hello, I get my vitamin D tested a couple times a year. I take a D supplement every day. About 2000 iu. I was told by my doctor that folks with autoimmune diseases often have low D.

  • amyb

    Member
    February 2, 2022 at 3:29 pm

    Hello, I get my vitamin D tested a couple times a year. I take a D supplement every day. About 2000 iu. I was told by my doctor that folks with autoimmune diseases often have low D.

    • john-palatucci

      Member
      February 10, 2022 at 2:00 am

      3000 iu D, calcium w/ magnesium, zinc, c,b12, imuran 3 daily and mestinon 2 daily, 10mg Prednisone every other day. Was diagnosed in 2015, blood work every 3 months. So far under control for the most part.

      • jack-stayton

        Member
        June 22, 2022 at 9:06 pm

        I’m interested in what blood work you get done every 3 months?  My neurologist has never ordered a blood test since my original AcHR tests in 2018.   When I ask he tells me there is no test that will tell me how I’m doing!  I’ve thought all along that he is wrong…worse than wrong but I get  nowhere.

    • eleanor

      Member
      December 20, 2022 at 7:20 pm

      My dr just suggested taking Biotin for problems I’m having with my toenails and fingernails. Has anyone had any problems taking Biotin?

      thanks

      • jodi-enders

        Moderator
        December 21, 2022 at 2:45 pm

        Hey Eleanor! From my search, it says Biotin can interfere with some bloodwork results. This is the case with many supplements, and your doctor should know to consider this when reading your lab results. I am not reading anything that Biotin triggers MG symptoms. But everybody is different, so I would pay attention to any changes you notice after you start taking the supplement.

        In general, with supplements, you need to stay cautious of products that advertise they boost the immune system. They may contain a high amount of magnesium which is contradicted to use with MG and has been known to cause MG crises. Small amounts of consuming magnesium should be tolerable with MG. Your doctor would be the one to ask if the magnesium amount is too high 🙂
        – Jodi, Team Member

  • tim-lindsey

    Member
    February 2, 2022 at 7:23 pm

    I take a bunch…
    Vit D, E & C
    Fish Oil
    Zinc & Quercetin
    & Low Dose Aspirin

    All except Quercetin recommended by my pharmacist team.   Don’t know of any that particular help with MG issues, but thankful I’m staying healthy and getting through a dangerous winter flu season.

  • kenneth-berg

    Member
    February 2, 2022 at 8:12 pm

    Like Tim, I take a lot of supplements.  The one required by my doctor for my MG is 1200 mg Calcium every day.

  • scott-mccormack

    Member
    February 2, 2022 at 8:22 pm

    Hi all-  D3, C, Omega 3, Tumeric, zinc, and ,due to the prednisone I take, Calcium.

  • craig-moore

    Member
    February 3, 2022 at 9:13 pm

    I also have low Vitamin D (D3 50mcg) and currently being tested twice a year.  I also take Iron (65mg), and B12 (1000mg) due to past anemia.  I also take Mestinon (3mg) to help me sleep.

  • amy-cessina

    Member
    February 5, 2022 at 5:07 pm

    My doctor says everyone has low d . I’ve taken vitd for years  without any rise in levels. So I suppose my body knows where it should be. It’s not completely bad but borderline every time. (20) no matter if I supplement or not and I get that exact reading for a decade.

  • Marvin Yudenfreund

    Member
    February 5, 2022 at 9:42 pm

    Haven’t seen any literature on it, but I’be been taking lecithin for a while.  Lecithin is a precursor to choline, needed for the production of acetylcholine that transmits nerve signals to muscles.  Studies also suggest that lecithin could inhibit onset of cognitive disorders.

  • tom

    Member
    February 6, 2022 at 6:55 pm

    I take D, C, and Zinc along with a Multi Vitamin. I am fortunate at 74 to have my MG undercontol, or at leasat as I see it undercontrol. Have had MG for 2 + years, yet I do expierence times of lose of energy and some muscle contorl – not severe yet I do notice it in my golf game and day to day living. I get IVIG quarterly, on Mestinon daily, and still walk at leat 3 miles a day on play golf 2 to 3 imtes a week – weather permitting. I feel at times that MG wants to take over my life, but I just do not let it. I have lost muscle strength and what I call “control” to some extent, but I am 74 and understand that some of this is just age – but I know that is is more than just age. I have good Drs to talk to that understand who I am. I also out to others and challange my Drs all the time. I understand that MG has effected my life adn while I do not like it I know it is something that I have to deal with. I understadn that MG has far worse effects on many that follow this blog, and my heart goe sout to ech of you. Hange in there – keep youi attitude up – love each day – and make the best of your life. Peace

  • john-ulfelder

    Member
    February 10, 2022 at 2:32 am

    I take a wide range of supplements daily. I also take various medications for my MG (prednisone and mestinon) as well as for other health conditions (e.g. statin, blood pressure medication, medication for my enlarged prostate, etc.). I stopped taking magnesium when I learend it might further weaken the muscles affected by MG. Based on what I am reading I will be adding calcium to my daily supplements. I am 81 and was preliminarily diagnosed with MG a year ago. Couldn’t chew, couldn’t swallow and my eyelids were drooping badly and interfering with my vision. Had a feeding tube installed in my abdomen. After being released from the hospital and the rehab hospital, received further therapy at home. Regained chewing and swallowing functions, tube was remioved. Eat and drink whatever I want (no alcohol since last March. liver feels better!).My ptosis, drooping eyelids, has not improved. No problems with weakness in arms or legs, or difficulty breathing. My diagnosis is preliminary because none of the blood tests confirmed the presence of any MG related anti-bodies. My EMG tests were also negative. Am planning on getting a second opinion concerning my diagnosis and treatment at the Mayo Clinic in Minnesota. My current neurologist is quite supportive of my intention. He is a smart and personable doctor who I think is quite open and would welcome having another doctor or doctors looking at my situation and trying to figure out what is best for me.

  • june-robertson

    Member
    June 18, 2022 at 11:01 pm

    I have been a myasthenic for sixty years. I trained as a naturopath/herbalist to help myself and others. Having been very very ill at 18 years and improved by thymectomy at 20, I have looked after myself well and even became a massage therapist at 50 years of age. I don’t drive because of potential double vision, so walk everywhere which is perfectly possible most days, and keeps me fairly fit. I suffer mostly when I have a cold or ‘flu.

    I personally find I am sensitive to wheat, and always feel worse when I use it; oats and many other glutens are OK. I minimise dairy except for yoghurt which is a wonderful help when the Mestinon cramps overtake me. Even a cup of milk coffee can stop the cramps in their tracks if there is no yoghurt handy. Cramps are always worse if tablets are taken on an empty stomach.

    I eat lots of fruit and vegetables, some brown rice and chicken and fish. I try to minimise sugar, and drink a small glass of wine several times a week. Occasional red meat.

    Supplements, I think are needed. The tablets increase the peristalsis so the food passes through our systems a bit too quickly…..I take  fish oil, vitamin D, Co Q10 (for artery and vein support and energy…I am 78), vitamin C and B intermittently if I am tired or not functioning too well. I also use astragalus, a herb which I find balances me(except if ill with infection).

    I see a chiropractor every month as my muscles  don’t always hold the bones in place and I have a good wholistic GP who always listens and we work together on any problems.

    I feel very blessed.

     

     

     

     

     

     

  • june-robertson

    Member
    June 19, 2022 at 2:22 am

    PS to my Supplements and Vitamins submission. I never never drink tonic water or bitter lemon which contains quinine….my eyelids will be at half mast within minutes! I avoid licorice which somehow interferes with the neurotransmitters, I avoid nicotine as I once became very myasthenic when working in a science lab where the cabinets were sprayed with nicotine sulphate. And I am very very careful around any herbicides or insecticides as they can contain neurotoxins.

  • irene-hand

    Member
    June 25, 2022 at 2:51 pm

    This is an interesting and important topic.
    A recent 9-day hospital stay for exacerbation resulted in my changing many supplements I’d been taking.
    I was taking a high dose of Vit D3 like many who posted. I became Vit D and Calcium toxicity.
    Recommended D3 dosage is 50 mcg (2000 IU) and has a warning that taking more causes toxicity.
    MGers need to carefully read what’s in supplements as Magnesium is often included with many.
    I thought it was okay to take a small dose of Magnesium, but was instructed to stop taking supplements that had Magnesium and also stop taking Calcium Carbonate.
    So now this is my supplement list:
    1200 mg Calcium Citrate
    50 mcg Vit D3 (as cholecalciferol)
    2000 mg Omega 3 Fish oil daily
    680 mcg Folate daily
    300 mcg Vit B12 (methylcobalamin)
    750 mg Strontium for bones
    45 mg Vit K2 (MK4) for bones
    500 mg Vit C sustained release
    3 mg boron
    100 mg COQ10 daily
    4.5 mg melatonin nightly

    • Angel

      Member
      April 24, 2023 at 8:08 am

      Hello Irene… how are you? I was reading your response and I found out we use almost the same supplements dosis. Have you made any changes? I am wondering about the vitamine D3 in a high dosis.  I found out the following link (obviously this is not a promotion neither a medical suggestion)…  https://jefftbowles.com/myasthenia-gravis-cure-with-vitamin-d3/… I will check with my doctor… perhaps you can do the same and then discuss …

      Take care and blessing…

      Angel

  • leanne

    Member
    September 21, 2022 at 8:55 pm

    Hi.  I have had MG for 32 years and mainly under control.  I have osteoarthritis in my hands and back.  Eighteen months ago severed my right quadricep and had emergency surgery to reattach it.  It has been a long road back to learn to walk again without assistance with a stick.   i am not able to walk too far without stopping as my back hurts and my breathing has been a real problem. I have seen a respiratory specialist and he says that it is asthma.  I also think that I am very unfit as I have put on a lot of weight and my leg has out me back.  Any way I am currently taking 7-1/2 Mg of prednisone, rituximab transfusions yearly and plasmapharesis monthly.  I am going to ask my Neurologist about Ivig next appointment.  I also take bp meds, and cholesterol meds and an antidepressant as 5 years ago I had a mental breakdown.At night I take 8 Mg of compounded melatonin.  I take quite a few supplements and really unsure whether some are necessary.  Fish oil, coq10, executive b, vit d, calcium supplement, vit b3; probiotics and 6 Panadol osteo/day and aspirin.  I am seriously thinking of giving up working as lately struggling with my mental health and stress.  I would like to apply for a disability pension but believe it is really difficult and time consuming.  I miss my golf, my long walks and especially the loss of my black Labrador.

  • michael-powell

    Member
    December 21, 2022 at 8:15 pm

    I was diagnosed with MG in 2018 at age 65.  Mt first neurologist was a strong proponent of a vegan lifestyle and necessary supplements to accompany that lifestyle.  As a committed carnivore, I could not buy in to the suggested lifestyle but did accept the supplements be proposed.  I have been on a longtime regimen of supplements which I think has helped keep me healthy and stronger than I might otherwise be.  I currently take fish oil, Super B-Complex, a daily multivitamin, D3 calcium citrate, and biotin.  I am also on 150 mg azathioprine and 20 mg prednisone since June.    Overall, I am doing very well and am still working,  I climb 2 stories to my office each day and average 4-6000 steps per day.

  • michele-ayers

    Member
    April 1, 2023 at 8:24 pm

    HI’

    I take a multivitamin,

    then in alphabetical order..hehhe

    B, C, Calcium, D, E, Magnesium, Turmeric, Zinc

    plus my regular…prednisone, synthroid, lexapro, wellbutrin

    plus omeprazole and sometimes an inhaler!

    gosh..do you remember when we were kids and didn’t take any?

    DO YOU CARRY A CARD OR WEAR A BRACELET that identifies MG for first responders?

    Thanks michele

     

    • rick-federmann

      Member
      April 5, 2023 at 8:14 am

      I wear a red dog tag with a matching red wallet card. I have an additional wallet card that I printed that says to look at the info sheet in the cash pocket of my wallet. The sheet has detailed identification, contacts, physicians, cautionary drugs, etc.

      I think the extra info sheet will be helpful if I have a crisis in a remote area where people may not know anything about MG. However, both times that I’ve been transported by EMS  in Colorado Springs they didn’t look any further than the dog tag. So I’m undecided if having the extra sheet may be overthinking it.

       

    • paul-spychalski

      Member
      September 16, 2023 at 9:52 am

      How much Prednesone do yo take daily. TIA

  • rick-federmann

    Member
    April 5, 2023 at 8:13 am

    I’m 67 and was diagnosed 5 years ago. I’ve had a crisis on a couple of occasions, one which was a near-death experience. Additionally, I’ve had some experiences that created a lot of physical stress. Each time, the MG progressed so that the symptoms have stayed more pronounced. I wasn’t optimistic about the future.

    I started following a plant-based diet (no meat or dairy) and now follow the guidelines of NutritionFacts.org, including which vitamins and supplements to use. Of course, I keep MG restrictions in mind, such as no magnesium, when I choose what to consume.

    Result: In just 4 months I’ve lost 20 pounds, no longer need blood pressure pills and have eliminated a couple of other meds. My A1C dropped from 7.9 to 6.7 in the first 90 days, even though I now eat a lot (a lot!) more carbs. Notwithstanding MG weakness, I’m feeling pretty good.

    Bottom line: Although I cannot reduce MG, I can deal with MG symptoms much better when I’m feeling better in general.

    I recommend NutritionFacts.org because it’s not just another health site. It is a 100% free site (no ads) by a physician with amazing credentials. His videos are informative and entertaining.

     

  • wayne-eisen

    Member
    September 20, 2023 at 6:22 pm

    Hi, Folks – <div>

    I take 40 mg of prednisone per day. I’m 74 years of age. Prednisone is notorious for weaking bones and can lead to osteopenia and osteoporosis.

    I take a lot of powdered pure Collagenn in very healthy smoothies. I has a bone density scan done recently. I had one about a year and a half ago. The result of the recent scan was a statistically significant increase (improv) in bone density, despite the prednisone and aging!

    Cleveland Clinic, a reputable source of information, has this to say about Collagen.

    Collagen’s main role is to provide structure, strength and support throughout your body.

    Collagen’s specific roles include:

    • Helping fibroblasts to form in your dermis (middle skin layer), which helps new cells grow.
    • Playing a role in replacing dead skin cells.
    • Providing a protective covering for organs.
    • Giving structure, strength and elasticity to your skin.
    • Helping your blood to clot.

    </div>

  • wayne-eisen

    Member
    September 20, 2023 at 6:27 pm

    I can’t overemphasized the significance I place on consuming a lot of collagen. And I’m pleased report the my neurologist had finally agreed to prescribe Vyvgart. 😅

  • sharon-haw

    Member
    September 22, 2023 at 6:11 pm

    The only supplements that my neurologist recommends are Vitamin D (2000 IU) daily and calcium preferably naturally occurring in a whole food source for better absorption but supplement if needed to reach 1500 mg daily. The calcium is more because of the medication I’m on and I have osteoporosis. He also said I could take more Vitamin D (I live in Canada with limited sunshine) but not to exceed 5000IU as the toxicity level beyond that has not been well established. I am transitioning to a vegan diet and have been advised to get tested for my Vitamin B12 level once I’m further into the transition. I heard from a registered dietician that turmeric with black pepper (helps with absorption) is a good supplement for vegans. I’m not there yet and I haven’t asked my neurologist about that yet. I treat supplements as drugs – with MG, the fewer I take the better. The rarity of MG means that research rarely includes MG patients. Vitamin D has been shown to support a healthy immune system in large studies.

  • Marvin Yudenfreund

    Member
    September 23, 2023 at 4:34 pm

    I understand your concern for osteoporosis. Too bad your neurologist is unfamiliar with the groundbreaking work done back in the 70’s by Dr. Charlie Pak at the General Clinical Research Center at UT Southwestern Medical School in Dallas. He demonstrated the effectiveness of calcium citrate as an osteoporosis preventative – it’s called Critical, and you can get it or generic equivalents everywhere. Naturally occurring calcium, calcium carbonate, has an extremely low solubility product, rendering it virtually ineffective as a bone-thinning preventative.

  • kay56

    Member
    September 25, 2023 at 4:16 pm

    I take many supplements. My most important is Huperzine A, REPLACING Mestinon! I had every horrible side effect listed for Mestinon! After two years of pure misery on Mestinon, I discovered natural supplement Huperzine A! NO SIDE EFFECTS!! and controls MG symptoms quicker and is longer lasting!

    I also take many other supplements: aloe vera, cinnamon, ginger root, hi-active tart cherry, Kyolic 101 and 104, ester C, Vitamin E, D3 2000IU, flaxseed oil, avacado oil, chelated zinc, cranberry concentrate, probiotic, resveratrol, tumeric, glucosomine chondroitin and multi vitamin & mineral (without iron as I’m 82 yrs old) and lots of trace elements.

    I was diagnosed with MG at age 75. I have had MG exacerbations but NO crisis to date! My MG is stable with Imuran and the Huperzine A and above listed supplements.

  • mstabile

    Member
    September 27, 2023 at 7:42 pm

    My current list of supplements are:

    Omega-3 (fish oil)

    Turmeric

    Areds-2 (inhibits macular degeneration)

    B-Complex

    D3

    E-400

    Calcium

    Ubiquinol (reduced CoQ10)

    L.Reuteri Plus (probiotic)

    Recently I changed my diet such that my daily main meal consists of (all raw): vegetables, fruits and nuts, all in smoothie form. Periodically I’ll eat protein-rich foods like peanut butter, chicken, dairy products, meat, and so on.

    I recently discovered that Turmeric can be a substitute for GERD (reflux) meds (like H2 blockers and PPIs) so I’m excited that I don’t have to take those any more. I have bulbar-type MG and my recent flare-ups are significantly less severe and I attribute that to my new diet regimen which also has me feeling much healthier now that I’ve cut out all processed foods. I take Calcium because I’m on Prednisone. The ingredients of my smoothie (based on my research and a visit to a certified nutritionist) contain all the essential vitamins and minerals that are not on my list above. I can’t emphasize enough how good nutrition can have a positive effect on MG symptoms.

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