So I get asked often about my disorder when I share that I have it. These are usually the days that I am symptomatic and I usually do not WANT to share because I am tired or struggling and cannot share easily because I am slurring or having issues breathing or swallowing but it is the best time for them to learn. I wish then that they would go to the websites I suggest but I know they will not so I share anyway despite how I feel.
- What is it?- Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body.
- Does it hurt/ do you have pain with it?- Not usually unless you have a comorbid (another disease or disorder with it) issue like arthritis, obesity, or diabetes. You are usually just fatigued mentally and physically.
- Will you ever get better? Is there a a cure?-It can get better with treatment but there is currently no cure
- How do you manage it?- With Immunosuppressants, steroids, and in my case plasmapharesis. Your life becomes these things and hopefully overtime you are able to taper done the doses of the amounts you take from when you were first diagnosed while staying stable.
- Can you still have children?- Yes, but you may not have as many and you are likely not going to get a natural birth as pushing is a muscularly fatiguing exercise which is dangerous for us myasthenics. Therefore we are limited for such a strenuous and highly repetitive endeavor and must have a c-section if we are cleared to conceive. Moreover, we are usually told to wait 2 years after diagnosis because of the increased risk of respiratory failure that can occur with myasthenics. I almost experienced this and was in denial of this ever happening to me and was glad that we did wait and not push the envelope.
- Is it contagious?- No, it deals with a defect of transmission of nerve impulses to the muscles. Therefore no issues with bacteria or viruses there for you to catch.
- Is it hereditary? Is it genetic- Myasthenia gravis is not directly inherited. Occasionally, the disease may occur in more than one member of the same family.
- Can you still have a normal life?- You can have as normal a life as can be expected when you follow your medication routine and work with your team of doctors. You can still exercise, eat a normal diet, and all have fun. I still enjoy everything I did before but with more rest breaks. But as we get older we tend to have to do that anyway right, LOL. The key is to plan those rest breaks and let people know when you need to rest and/ or if you do not feel well. Otherwise enjoy your life!
Additional questions can be answered at websites such as:
Very informative – thank you x
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No, Thank you! I just wish to inform people! People are merely just curious!
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