Hi;

I am a 32 years-old male with Congenital Myasthenia Gravis disease. I have been doing extensive search about my disease. At age 12, after I suffered rather severe measles, palpitation and fatigue problems started. I have a problem of severe internal fatigue which does not occur in myasthenia patients. It is totally different from muscle weakness. I have some acquaintance with myasthenia disease but none of them have such complaint as what I describe as internal fatigue. They seem to suffer only muscle weakness/fatigue. My muscular energy is rather good. Mestinon improves my muscular strength, but it has no effect on this internal fatigue. This internal fatigue problem does not let me sit comfortably, not to mention about walking. Even a little stair-climbing or doing simple errand while standing made my heart palpitate and I needed to sit or lie down. My muscles ached when I stood and forced my body. I mean my body muscles started to coerce. I barely can stand, get tired immediately. Symptoms are: severe internal fatigue,bizarrefeelings of head, shortness of breath, a littledyspnea, palpitation and muscle ache.

However, internal fatigue is a totally different problem,mestinondoes not help my internal fatigue but it improves my muscular energy. When I stand up and get tired, my body load onto my muscles and my muscles start to ache; if I force myself alittlebit more, muscles start to contract severely. There is constant ache/pain in my muscles. My muscles are constantly being forced as if they can not meetbody'sdemands. I feel more difficulty when my body needsincreasedblood flow, for example during eating, my fatigue worsens. Problem of fatigue is more prominent during morning hours comparing to evenings. This means I nearly eat nothing at breakfast. Even after a small bite of pastry, severity of fatigue increases. I feel less fatigue by eating more food at lunch. It is also same with dinners. I mean my body seems to get better towardsevenings. I feel better especially after 8 pm. I used to eat my meal at once when my fatigue was less severe, but nowadays I need to divide my meal into three in order to eat without getting tired. For instance, I can consume my lunch in three separate sessions, like at 2 pm, 3 pm and 4 pm. If Idon'tdivide my meal and eat the whole at once (which is almost very hard), my heart squeezes and makes me feel very uncomfortable.

I have been struggling with this problem for about 10 years. It is growing continually, but it seem to me that its increase in severity halted. I used to walk 1 km before this problem started. Then this distance decreased to 500 meters with time and later to 300 m. Now I can only walk 15-20 meters and need to sit right away. I actually prefer to lie down because even sitting makes me tired. I must lie after 5 minutes of sitting. When I stand, I suddenly experience shortness of breath, palpitation and slight elevation of blood pressure. Severe internal fatigue forces me to sit and get some rest. One of the other problem that I have is muscle pain. They pain very badly when I get tired. I have sometimes numbness in my left hand and arm.

Moreover when I get tired, blood rushes away from my legs and ankles. I guess body distributes blood flow towards to vital organs to save them when it is under force.

I want to ask you this: have you ever met someone with myasthenia gravis who suffers from this internal fatigue more or less in severity? Or do you by chance know someone who might know a patient like me? If I get to know someone with myasthenia gravis who also has same problem with mine, I might use his/her treatment, exchange information with her/him and this could be very important for my treatment.

I thank you very much in advance.