Andy Coyne
Forum Replies Created
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Propanthaline tabs 15mg
Helps with loose stools, sweating and urinary urgency.
Made my life so much easier!
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I get twitching around my eyes regularly and in my calf’s as well. It’s independent of dose of pyridostigmine. The other problem I get is severe cramps at night particularly in my right calf! It can pull my foot so hard that it’s a straight line from my knee to my big toe and is excruciating! I eat bananas to get some potassium, it helps a bit but I still get them.
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For me it’s intermittent double vision, ptosis in my left eye most of the time but breathlessness and fatigue that gets worse through the day are the worst. I’m on 120mg Mestinon 4 times a day, prednisolone 12 mg a day and mycophenolate 1000mg morning and 1500 mg evening. I’ve been up and down on prednisolone like a yo-yo. Nothing seems to affect the fatigue and breathlessness neuro thinks it may not be MG but I’m pretty convinced it’s MG. I’m diagnosed as ocular but I’m pretty sure it’s generalised. The problem is that most neurologists will only see 4 cases of MG in their careers and unless your managed by a neuro in a major teaching hospital with a special interest in MG your unlikely to get the optimum treatment. Even then it’s often controversial. Find a neuro that really knows their stuff and stick to them like glue!
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I have obstructive sleep apnoea and use a CPAP. I also experience breathing issues (no lung disease). It really does help me sleep to the point I find it difficult to sleep without it!
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I think more awareness in the medical profession is critical. The number of people on the various Facebook groups whose neurologist tell them a positive test isn’t positive enough is astonishing! The numbers turned away as having anxiety symptoms or something else despite having very sound diagnostic indicators including emg and achr positive. Things have to change!
insuspect that the real number is likely to be 10 times that commonly postulated!
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I would also say that if the symptoms are so mild or asymptomatic then you wouldn’t count them probably anyway. They may have a medical event that exposes it and then of course you would count them.
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I found this after a bit of research
Should myasthenia gravis patients undertake an exercise program? Different sources provide different answers. The very general answer is — exercise is helpful for people with MG, but patients should not embark on exercise programs that require maximum output and produce weakness. Exercise should be done in a way that stops short of muscle fatigue, and this point will vary from person to person depending on age, overall fitness level, MG symptoms and other factors.
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I’m taking 120mg 5 times a day and 15mg of prednisolone a day. I get similar side effects but they are worth putting up with to get them”relief” that mestinon gives me. It’s a weird disease and sometimes difficult to come to terms with. I think, personally that 30 mg is a very low dose and even 60mg, widely regarded as the standard dose, is low given that your also having IVIG.
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I am diagnosed with ocular MG.
To some extent the time of day plays a part! I can walk around a mile or so in the morning without difficulty most mornings. By mid afternoon I’m getting a bit breathless over 2-300 yards by late evening a 15 feet round trip can leave me struggling with breathlessness and a high heart rate. If I overdo the morning walk it can take me out for the rest of the day. -
Mainly walking now! We have a dog so every morning we take her to play ball and walk. It’s normally about 1 1/2km if I go over 2k it’s tomfar and wipes me out for the rest of the day. May do a shorter walk early evening but often it’s just not possible due to general fatigue.
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I take 2x60mg 4 times a day and have taken 3x60mg with no adverse effects at all. However you should never take more than your prescribed dose.
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I’m 3 years into my MG journey and no nearer to getting anywhere near remission. In fact I would go so far as to say I’m refractory to treatment. I’m diagnosed as ocular but get sometimes severe breathlessness, variable fatigue, sweating due to the side effects of medication and very heavy legs. I am under the care of 2 neurologists, one a professor of international standing in the disease and have not been able to get anywhere near control. I feel that the life limiting part of this disease is not he disease itself but the treatments! The professor tells me we are edging closer to a cure but when he can’t say!
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The same as you. Ptosis mainly in my left eye. It’s unresolved when I go to bed. Also when I move my head to extremes to shave for example my left eye closes. The fatigue and swallowing remain unresponsive to treatment (steroids, mycophenolate and mestinon) as does the breathlessness and extreme sweating that comes with fatigue. This is the most limiting part of the disease for me.
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Sounds pretty classic MG symptoms to me. Generalised not Ocular though!
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I’m very surprised that you were prescribed Bactrim it’s virtually never used in the uk now.
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Ask for a trial of Mestinon (pyridostigmine). If that helps your symptoms it’s MG!
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Resperitory is not under the control of the autonomic system. If you can control something is the sympathetic nervous system.
muscarinic MG is known as MUSK – muscle specific kinase MG.
A positive test is a positive test for achr MG. Level is not necessarily indicative of severity. I know people with a level of 6 mmol (uk measure +5 is positive) with severe MG. Mine is 242 with largely ocular symptoms with some generalised fatigue and breathlessness.
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Resperitory is not under the control of the autonomic system. If you can control something is the sympathetic nervous system.
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It can take a good few weeks to see the benefit of prednisolone up,to 3 months I’m told. Most physicians make the mistake of starting in too low a dose!
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I was put on 40mg daily and rapidly gained 50lbs. Now down to 10mg a day but finding it nigh on impossible to lose weight. I tried just after Christmas and lost about 10lbs but the cold weather and dieting was crucifying! It’s getting a little warmer now so will have another go in the spring.
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Sound like you diaphragm to me. I also sweat for England!
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I’m 71 and achr positive and told I have ocular MG.
breathing issues started about a year ago and followed almost exactly the same path as yours and I ended up in hospital with a flare. I am also breathless and sweating most of the time. I can manage a good walk in the morning but by 10pm 20 feet leaves me gasping with a heart rate over 120! Also my oxygen drops at night to under 94% can go down as far as 82%! Doctors have resisted the MG is causing the breathlessness. I have had lung function tests- all ok. Chest CT scan – clear, positive for obstructive sleep apnoea. Ecg, stress test, heart CT scan all normal though I only managed 3 minutes on the treadmill. So my lungs are fine, my heart is fine now surely there’s only MG left.
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Carol I liked that explanation of the sleep study! My original neuro asked my GP (primary care physician in the UK) to order a sleep study a year and a half ago, still not done! I’ve had to go to another city to get action from a professor of Neurology who is a MG specialist. It’s been organised by him along with a battery of test to isolate breathing issues!
Lisa I hope you are successful in finding a great doctor, don’t stop until you do!
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The uk charity is Myaware.org if anyone wants to access it.