June Robertson
Forum Replies Created
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I am 80 and have never driven because when I was diagnosed at 17, I would have to lift my legs(with my arms) on and off the clutch, accelerator and brake! I also had intermittent double vision. It is rare now but I would hate to cause an accident. Consequently I walk a lot which has been helpful for my general fitness.
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2 x 10 mg tablets in the morning and 1 or2 10mg tabs later in the day if physically active. I was on 20x 60mg Mestinon before my thymectomy when I was twenty(I am now 80). Plus I eat healthily …lots of fruit and vegetables, minimal wheat and sugar and I walk and/or swim daily and take Astragulus, an adaptogen herb most days. It has helped a great deal. I feel lucky, and sad when I read of others’ struggles…I have been there.
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Yes…..walking 2 to 3 kilometres a day and for 5 months in the warmer weather in Australia I swim for 20 minutes a day and always feel really well after this. I am 80 years, have had MG for 60+ years and became a naturopath to help myself and others. I take the adaptogen herb Astragalus (5mgs) daily and this seems to soften the autoimmune reaction. I feel lucky and happy. It was not like this in my youth and I do sympathise with those of you who struggle.
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Seventeen. I had just had a hepatitis vaccine which was possibly the trigger. But I was in my first year at university and very stressed. I was diagnosed fairly quickly but it was a rollercoaster ride. Studied with one eye closed due to double vision, fell off my bike and couldn’t get up until the strength came back…a bus went around me and left me on the road. Often fell over on the campus and would be picked up by the gardener. People thought I was drunk. My speech was slurred. My friends in college would have to cut up my food, and when I got it up to my mouth I would choke. Liquid would come back through the nose because the palate was paralysed. Amanuensis for exams. I am now 80 and fairly well….due to thymectomy, homoeopathy, herbal medicine(I became a herbalist and massage therapist!) and careful marshalling of energy. Am so grateful, and so very sympathetic to those of you whose struggles I understand so well.
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Yes, it’s a vexed question re vaccines and autoimmunity. I was MG triggered (probably) by a hepatitis vaccine in 1962 and had a thymectomy in 1964; I do think there were hints of MG prior. The surgery helped as did naturopathy and homoeopathy and I eventually stopped Mestinon for a few years and became a massage therapist! In my late 70’s I take a little Mestinon. I’ve had 2 x Astra Zenica, 3 x Pfizer vaccines with little myasthenic troubles, but have had mild Covid twice despite being careful, and subsequently, vascular issues ( BP issues difficult to control) and aches and pains which might be polymyalgia rheumatica. Who know if it’s vaccine related or just my age …almost 80. When I take my next vaccine, I will do what I usually do, take KI Immune Defence, which contains Astragalus herb, an adaptogen (Martin and Pleasance Pty Ltd, Melbourne, Australia) for a week before and a week after the booster. Adaptogens help the body cope with stress and return to homoeostasis. I believe they help me, not sure about you.
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I have been taking Mestinon for over 60 years. Eyelid twitching is an occasional occurrence. I reduce the dose slightly and it ceases.
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I was diagnosed in 1962 at 17 years of age, was very ill, taking 20+ 60 mg Mestinon tablets a day, plus other tablets called Mytelase(don’t think they are about any more) and Probanthine for the inevitable pain from overdose. I had a thymectomy(no tumour) at 20 years and gradually improved over about four years. Later I trained in naturopathy and herbal medicine and also became a massage therapist. In also used homoeopathy and natural remedies and I never took cortisone. I am now 79 years and only use 20-40mgs of Mestinon daily. I watch my diet carefully and find I worsen with wheat. Never ever take any drinks with quinine as the eyelids become half mast in 20 minutes. Covid was a bit problematic. I avoid any garden chemicals or insecticides which are neurotoxic. Don’t despair. It is a frustrating condition and your friends won’t necessarily understand.All the best!
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Swimming through treacle.
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Oh yes, and wheat will do it every time. Oats not too bad.
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Sometimes walking briskly(I am on minimal Mestinon these days) will give me a tight chest. Worse since 2 doses of Covid. My blood pressure has been a bit chaotic since Covid and I’m now on the fourth type of BP meds. Very hard to determine what is variable BP, what is MG and what is the result of Covid and subsequent pneumonia….
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I was a shy eighteen year old attending a dance and just getting used to being a myasthenic. A horrid boy with a red sports car told me I danced like a spastic!ย I now pre judge anyone with a red sportscar! That was sixty years ago and I still feel pain at the thought of my embarrassment, bewilderment and grief.ย Many of you will have had similar as it ISย a bewildering and variable disease and people don’t understand.
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I believe there is no reason why alternative therapies cannot be successfully combined with medical treatments and in my case I have used both. I was so impressed by the help I received from a homoeopath that I trained in herbal medicine, massage, kinesiology, reiki and some oriental medicine techniques.(My background is psychology), plus I did homoeopathic first aid which is useful for acute situations. There is no simple solution for MG and I feel sad reading of the great difficulties which many of you have. I had already had a thymectomy many years before I visited the homoeopath, and had it not been for that medical intervention I probably would have died. Homoeopathy is a subtleย energy medicine(no, not “just water”), has been around for well over 200 years and works on the principle of “like cures like”. It looks at the causes of the symptoms, both physical and mental. Because the remedies are tailored to the individual, the remedies chosen for you might be different from those chosen for me. That is why you would need a classical homoeopath to help you. There is an International Academy of Classical Homeopathy which, I imagineย would help a patient find trained practitioners. Homoeopathy is well known in Germany, in India and the UK, and I believe is used by the British royal family.
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had MG for over 25 years when I visited a classically trained homoeopath in Australia where I live. I worked with him for several years and followed his instructions carefully and gradually was able to come off Mestinon and gained sufficient strength to become a massage therapist! I had been on approximately 5ย x 60mg Mestinon prior to this. (Before the thymectomy 20 years before, I was taking 20 tablets+ per day so I had been a seriously ill person). I had never ever taken Cortisone which probably would have made my treatment much more difficult.
Yes, it can work, but you need a skilled practitioner and you need to understand the principles of homoeopathy and to be patient.ย Some years later, and now at 78 years, I take tiny amounts of Mestinon when needed. I think Covid may have added to my autoimmune difficulties.
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I have never smoked, nor has anyone in my close family. I was diagnosed at 17 years (now 78). When I was 22, two years after my thymectomy I worked for a scientific research organisation in Australia. I was reasonably well (maybe 6 x60mg Mestinon daily) but had a serious, but temporary exacerbation when exposed to nicotine sulphate which was used to “sterilise” cabinets for experiments. I recovered quickly but noticed in very smokey social environments I would become weak.
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I have had MG for 60 years. What will give me a flare up is:
1. getting chilled or maybe overheated
2. drinking anything with quinine in it, say tonic water or bitter lemon
3.getting suddenly stressed, or being frightened
4.being close to cigarette smoke
5.touching or breathing in agricultural chemicals
I am best if I don’t eat wheat, or too much other gluten.
Minimal alcohol only. Keep off licorice.
I take astragalus a herbal product as it modifies the immune system. -
Two years ago I had my first ‘flu shot ever and contracted shingles four days later. Because of that I did not have the shot this year but got the ‘flu for 3 weeks. Then two months later got Covid but was not very sick as I’d had 2 Astra Zeneca shots(I’m in Australia) then 2 Pfizer boosters. I also had the Lagevrio anti viral which worked quickly and well. But after that an arthritic disorder was triggered(Polymyalgia?) which is painful and unpleasant. Then I got pneumonia which made me very tired and breathless. I then had 2 lots of antibiotics. What a tale of woe! MG is the least of it. I’m now taking lots of powdered vitamin C, some Vitamin D and slippery elm every morning to repair the gut lining after antibiotics. I hope for a better 2023. Oh yes, and I’ve discovered taking Fexofenadine for hayfever makes a huge difference to the joint pains and swelling .So there must be something allergic happening.
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I had 4 vaccinations and I wasn’t very sick. I immediately went on the antiviral Lagevrio which helped. But after it was over I was tired; polymyalgia rheumatica was triggered(it had previously come on after a bad ‘flu), then a few weeks later breathlessness and pneumonia. I don’t know how much blame to put on Covid. It’s now 2 months since I tested Covid clear but I am still very achey and not sleeping well due to pain. The MG is the least of it. Only 4 x 10 mgs of Mestinon daily.
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It is SO GOOD that this forum is available. It would have been such a comfort when I was seventeen in 1962 and struggling alone. I was the sixth thymectomy for MG in Australia, so there wasn’t a lot of information available despite finding a good neurologist and having a “recovered myasthenic” nurse me in hospital.
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Shawna, I have done a lot of “alternative” things which have helped….like a chiropractic adjustment once a month. I watch my diet a bit…..I personally react badly to wheat(I am not coeliac) and prefer to eat lots of fruit and vegetables, fish and chicken, and not much red meat. I watch sugar intake, drink a little white wine, plenty of water, take some yoghurt, especially to “cushion” the intake of Mestinon( which causes cramps as we all know). Thirty years ago(post thymectomy) I saw a classical homoeopath and after two years of treatment I was down from say. 6 x 60mg Mestinon daily to none! It was a gradual process and I trusted his knowledge (it was like peeling back layers of an onion!) and was quite fastidious in following his advice. I take Astragalus (5g) daily if I feel a bit “droopy” for a few days and although some say it is not recommended for MG, it is an adaptogen herb and has helped me (unlike some other herbs like Echinacea which stimulate the immune system in an unhelpful way for a myasthenic). Post Covid I take a little Mestinon, say 20 mgs in the morning and maybe 10 to 20 mgs later in the day if active. I don’t have a car and have never driven as I felt I might not always see clearly, and I don’t much like stairs or hills and the repetitive moves of dancing , sadly, weren’t for me. I would use dandelion as a liver herb, if a bit flat, and maybe vitamins such as B, or particularly B12. I find a little magnesium (usually not suggested in MG) a help if crampy. My GP suggested I take Ubiquinol, a version of Co Q 10 but this is largely for heart and circulatory help.
As you see, it has been a journey of discovery, and some frustration, but from being so weak I needed an amanuensis to help do University exams(psychology) in 1965,and could only study with one eye covered, I now lead a really great life, as long as I keep taking care. I always avoid smoke and agricultural chemicals which might contain nerve toxins. It’s an individual thing and it may be that what suits me doesn’t help for others. But I hope this answers some of your questions. There is no magic bullet. I absolutely had to help myself. Good luck.
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Hi Leonora -Diana. If you read “Prescription for Herbal Healing” by American Author Phyllis A. Balch you will see that she recommends Astragalus as a beneficial herb for MG. There are other herbs not recommended, like Echinacea, but I have found Astragalus wonderful. It is not an immune stimulant in the same way some other herbs may be as it doesn’t stimulate reactions that create antibodies which are problematic.
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Oh Andi, I do feel so sorry for you. I have had MG since I was 17, and I’m now 80 and I can thoroughly sympathise with you. I really think only my mother really understood and one girlfriend who had chronic fatigue. My husband was kind, but over the years he became exasperated, especially after I caught a virus which went to chronic fatigue and for me that was worse than the MG. Our 26 year marriage broke up. I had help from a skilled naturopath/homoeopath and eventually studied this area(a patch over one eye due to double vision, ofcourse!) I became pretty well on this regime and was able to help a number of local MG folk. I could sense the relief, as here was someone who really did understand. Most others don’t really, and you can’t blame them. Take care. It can get better. I am happy and pretty well these days. Kind regards to you. June
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Oh my goodness Mick, I can sympathise. I’ve had MG for 60 years and was married for 26, then separated. My husband was very kind and thoughtful and I was so grateful, but then I got chronic fatigue after a virus and I think that was just too much! I was in a lot of pain, weak and not a cheerful soul. Came time for our 25th wedding anniversary and he did not want to go out for a celebration saying “I don’t want to contemplate another 25 years like the last 25”. I was shattered at that point, felt terribly guilty, angry and sad. I left the marriage the next year to allow him his freedom. It really did not make him happy, so perhaps it was not all down to me. MG is such a puzzling and variable disease. It will be bewildering for your wife. I found only my late mother, my aunt and one other girlfriend had any cognisance of my difficulties, and maybe only a couple of doctors. We are lucky to have this website to have the occasional debrief! Take care. WE understand.
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Nestor, that is interesting re your sensitivity to dairy and gluten. My homoeopath certainly advised me to avoid both and it made a huge difference, especially the avoidance of wheat. So good to know how well you are.ย June
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Barry it depends what the trigger was. If it was say, a drink of tonic water, maybe a couple of hours. If it was too much wheat, maybe a day. If it’s stress, avoid it if possible and try not to anticipate it as the fear can tighten your throat muscles and also affect your swallowing. I lost my voice once during a very difficult life event. What helped me was a Bach Flower Remedy called Centaury taken with Rescue remedy. I am in Australia and Bach Flowers are readily available here. Also meditation and massage. I became a natural therapist in my mid fifties to help myself and others so this might sound a bit out of “left field”. My sympathy and the best of luck.