Hi,

I am a 26-year old boy Congenital Myasthenia Gravis patient. After a severe Measles disease at the age of 12, I started having tachycardia and fatigue problems. Due to these problems I could barely climb a few stairs or do simple tasks while standing, because I was feeling great need for rest. Because of that situation, I discontinued school for one year. Then my symptoms got better and I restarted school. After finishing the high school, my symptoms reappeared and they still continue. For the last 2 years, the severity of the symptoms got worse and they became unbearable. They were not that severe before. At the summer of 2005 muscle pains and spasms started. While standing, all my muscles started to ache. I get tired easily while standing, even i get tired while sitting after 10 minutes. My main symptoms are severe fatigue, numbness in my head and muscle pains. I have to lie all the time. I lie almost 4-5 hours every day. I thought it may be related with my body condition, so I started walking for half an hour daily, but it had no effect although i walked for months. My weight is 55 kilograms and I am 185 cm long. We thought may be thinness caused these, so I put on weight and became 61 kilograms but it was no useful, what’s more my symptoms got worse. I visited many doctors and hospitals. I had 30 different blood tests, and all revealed normal values. I have no cardiac problem. I had 2 Echocardiographies, Holter monitoring and Talium Perfusion Scintigraphy and results turned out to be normal. My brother also has Congenital Myasthenia and he has none of the problems I mentioned above.

I think I have a problem wit my muscles. When i got tired, my muscles start aching and if I continue applying power, I have severe muscle spasms. I have this muscle pains all day long. When I wake up, I feel like I had exercised for the whole day. My muscles act like they can not meet the needs of my body. When the need for blood increases like eating, 2 hours after the meal, my fatigue gets worse. I cannot sit normally at the dinner table. I have to bend my knees over my abdomen to feel comfortable while eating, I guess this makes more blood to reach my stomach. My fatigue is more severe at the mornings, I almost eat nothing at breakfasts due to this. At lunch time, I can eat more and feel less tired. It is the same with the dinner. I feel like getting better in the daytime. Before I can finish eating, I have to go and have a rest, then I come and finish my meal. My pulse rate can rise up to 130-140 bpm while standing. Also my diastolic blood pressure rises up to 90-100 mmHg. The increase in my blood pressure is more obvious with diastolic blood pressure. I think my muscles do not function well enough to pump my blood back to my heart. Beacause this fatigue started after I finished school and stayed at home without any exercise. Can muscles be damaged due to lack of exercise? As I thought like this, as I mentioned before, I walked 1200 meters every day for months but it had no use, even it got worse. ?f it was because of lack of exercise, these walks would have been useful i guess. I am using a half tablet of Mestinon and i think it is enough for me. My Myasthenia is not that severe. Besides increasing Mestinon dosage does not help with my fatigue problem. My muscle problem is pretty good, but this severe fatigue does not let me move. With this fatigue problem, there also started a problem with my eyes. My eyes get tired easily while reading a book or in front of the computer. Even they get bloody if I force them too much. I can hardly work 3-4 hours in front of the computer and I even cannot study from my books. I think both my problems are related to each other. Because as my fatigue problems gets worser, so does my eye problem. Maybe my eye problem is related to hypoxia or something else. Every month my situation gets worse, for example last month I could stand for 40 seconds but now I can stand only for 20 seconds and it still decreases.

What can I do now?

Thanks in advance for your help.

Welcome Bora -
I have severe fatigue too. My doctor evaluated me for sleep apnea - a fairly common problem in people with MG not sure about CMS. It may be that you aren't getting good sleep because of breathing issues and that would increase daytime fatigue. I do not have sleep apnea but for people that do there are several treatments.

My doctor prescribed Provigil. It is usually used for people with Narcolepsy but has been used with MS and MG to help reduce the fatigue. I think it has helped with my muscle fatigue too. Have you talked with your doctor about options for treatment? When I was on a lower dose of Mestinon my muscles got very tired quickly, had more spasms and cramps. Maybe you could talk to your doctor and tell them that you can't even get through the day anymore. Maybe you already have talked to them...Glad you found this place.
Gabe

Welcome, Bora! You seem to have very severe fatigue. I wonder if 1/2 a Mestinon tablet is enough for you. I have relatively mild MG, and I take a 60 mg Mestinon tablet every 3 to 4 hours. Has your doctor tried you on the corticosteroids yet, like Prednisone?