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    • #18188
      Jodi Enders
      Keymaster

      What are some of your favorite nutritional supplements or vitamins, or ones you take recommended by a health professional?

    • #18202
      Amy
      Participant

      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.

      • #18343
        John Palatucci
        Participant

        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.

        • #19379
          Jack Stayton
          Participant

          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.

    • #18203
      Amy
      Participant

      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.

    • #18205
      Tim Lindsey
      Participant

      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.

    • #18206
      Kenneth Berg
      Participant

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

    • #18207
      Scott McCormack
      Participant

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

    • #18237
      Craig Moore
      Participant

      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.

    • #18282
      Amy Cessina
      Participant

      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.

    • #18291
      Marvin Yudenfreund
      Participant

      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.

    • #18298
      Tom
      Participant

      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

    • #18345
      John Ulfelder
      Participant

      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.

    • #19368
      June Robertson
      Participant

      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.

       

       

       

       

       

       

    • #19369
      June Robertson
      Participant

      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.

    • #19421
      Irene Hand
      Participant

      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

    • #19998
      Leanne
      Participant

      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.

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