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Your Myasthenia gravis symptom that responds least to treatment
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Extreme fatigue and eyes (ptosis and strabismus). That’s continued in spite of weekly SCIg infusions, pyridostigmine and Provigil. This is all the harder because I live alone.
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Mine is definitely dysarthia. Slurred speech was my very first symptom and plagues me still.
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My vision, and it is my greatest concern. At 68, antibody positive, it was just discovered that I not only still have a thymus but it has thickened. I have been insurance approved for thymectomy in 2 days. I am extremely hopeful it will give my vision some improvement.
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I’m 76, diagnosed 1 month ago. Swallowing is the scariest, eating only baby food. Then, neck weakness so I cannot hold up my head while standing or walking. On 60 mg pyridostigmine 5x / day. Finally get to see my Neurologist after waiting one month after the referral. Pretty much just sit on couch & watch TV all day.
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I recently had eyelid surgery. The Surgeon shortened the eyelid muscle and it seems to be effective.
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My most problematic MG symptom is the shortness of breath/fatigue/chewing. I’m 39 yrs old and was diagnosed 2 years ago after I went into respiratory failure and spent 2 weeks on a ventilator.
I used to run marathons and now I can’t walk a block without being too winded to talk. I’m taking azathioprine, still on 7.5mg of prednisone(weaned down from 40!), mestinon frequently but I get GI side effects, and IVIg every 3 weeks like clockwork.
My neuro is awesome and she recommended Ultomiris. I’m excited to try it and hopefully not be so short of breath all the time!
Has anyone tried ultomiris?
-Emily
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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 am seeing many patients here talking about double vision being the most difficult symptom to get rid of with the normally used medications and treatments. It is my most disturbing symptom as well. I am supposed to be getting a pair of prism glasses soon. Has any one else gotten prism eye glasses? and most important How much did they help?
stan
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My main problem was not being able to swallow which meant Naso Gastric tube insertion every 3 months to be changed, which I dreaded, then I had a PEG tube. Which for 6 months I had it in I had an infection around/in the site. It was removed after 6 months as at last the medication worked. I have not suffered eye problems except a severely drooping eye for a month twice during summer and a stressful month. I also suffered arm weakness, slurred speech and finally breathing and being in ITU and on a ventilator at three different times. IVIG, plasma exchange did not work. I had my thymus removed but it did not cure me. Mestinon did little to help at varying times, but assists more with other medication. 60mg 3 hourly stopped me going back on a ventilator in conjunction with other medication. I was on Prednisolone from 60mg daily but as soon as my dose went down to 25mg or less my symptoms worsened, and it did not fully rectify them anyway. Eventually 100mg Azathiaprine has controlled it since 2014 and I have lived a fairly normal life since then. When we have tried to reduce my medication I start getting symptoms again. Even with the above Azathioprine dose, If my Prednisolone goes below 6mg I start having a problem. Having read of the many problems still suffered by MG patients on this site with still uncontrolled MG I realize how lucky I am, despite the extreme problems I have had. Because of this forum and what I have learnt, my aim now is to find a medication level where my symptoms are controlled again, with a dose as low as possible, but that still controls the MG, which seems to 6 or 7mg of Prednisolone daily and 100 mg Azathioprine daily (or maybe 75 to 100mg which I am currently testing) and accept the imperfections of that. Both medications have their imperfections/ side affects, but then so do all the other alternatives. So we are all” between the devil and the deep blue sea”, between side affects and the MG affects. I also found useful on this site a mention of the Tacrilimos medication for MG, although it is mentioned more for use for kidney transplant. This was suggested to me as an alternative to Azathioprine due to a very low white blood cell count and a recent (2017) kidney condition I developed and the skin cancers I have had due to the Aza. In the http://www.myaware.org site for UK MG it does not mention this medication at all, and I do not think it is used as a rule in the UK. In my own research and in the details on this site, it seem that it is used in conjunction with other medication, in japan I think it is steroids. It is Japanese developed drug and used as a first choice medication in Japan for Myasthenia patients I believe. After 2 years of thinking on it, I refused changing to this drug as it might still cause all the same side affects I have, plus I might still need prednisolone anyway, and maybe a higher dose. Worse, my MG might slip out of control that is currently controlled very well I realize now, have read all the stories on this site, So I thank you all for sharing, as it helps me to make a decision about my own situation as I hope my experience might assist someone. I am 68 and had MG since 2010 following swine flu, but was getting MG symptoms for 10 years before that, not realising I had MG. I mention this as some are ticking along without any medication and if one is younger that might be the better option. Due to my age and dread of going back to full on MG symptoms, I feel if I die slightly earlier following skin cancer lets say from the Aza or Diabetes from long term use of steroids, then I accept that. At my age I feel I would prefer the quality of life I now have, than change and find a suddenly lose that next week lets say, from changing a medication that is working, though with risks. We all have to make our own choice, from out own experience I think, the MG seems unique to us all. Maybe there will be hope as AI and other scientific innovations are making great strides in many conditions now, I have friends who have children with cystic fibrosis and treatment for that has increased significantly over the last 30 years. The same will be for MG hopefully.
myaware.org
Myaware is the only charity in the UK dedicated solely to the care and support of people affected by myasthenia.
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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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IVIG helping weakness and fatigue, but nothing has helped double vision, eyelid droop and blurry vision.
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Blurred vision is the worst symptom but as I get to the 8 week mark before my next infusion I have general muscle weakness. another interesting problem is my sinuses. The various meds blow up my sinuses to the point where it is hard to talk. No one can figure out which ones cause the problem. Especially bad for about one hour after I take the prednisone. – learning to live with this.
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