Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I have had breathing difficulties for a year.Two years before I was diagnosed with wasted lower back muscles and the neurologist called it camptocormia. I was hospitalised last Christmas for 6 days as the breathlessness got real bad. Now I find I cannot raise my arms and I drag my right foot. Also the last two days my speech is impaired at times.when that happens I found it difficult to swallow food. I've been to see a neurologist about 10 days ago, who said she would let me know the results of a blood test. I am very depressed. I feel no one is helping me. I am so out of breath that I stay indoors for days and weeks on end.i am left to die. I haven't contacted the doctor as I am now finding it hard to talk.i keep thinking that then neurologist is not contacting me because my blood test in normal. I'm paranoid. What should I do. I so need help to cope with my illness. Thank you.
I would also suggest a family member or friend be available to help with the phone call to your neuro. He/she can speak for you when your voice gets tired or you have breathing problems.
One word of caution: don't despair if your blood work is negative. That doesn't mean you don't have MG. I am negative on all known MG specific tests. Yet the test of my muscles showed abnormalities consistent to MG and I respond to Mestinon. Researchers are uncovering new causes of MG. The antibody for Musk positive MG was discovered in 2012. So, until that time, those who tested negative on other MG tests were sereonegative. Now, they've been identified through lab work! I guess I am telling you this in case your lab results are disappointingly negative. I don't know how many of us on the forum are sereonegative, but if that is your result, know that you are not alone.
Also, if your neuro is no help, search out one who specializes in MG. look on the website I mentioned for physicians in your area.
Keep checking back in. We are concerned about you!
If you are connected with a larger medical institution, you may be able to set up an account and read your lab tests and other medical records on your computer account, so you might check that. I can, and do and so I find out before my doctor calls me back.
Myasthenia Gravis is somewhat difficult to diagnose as there are various types, and no test can find all of them, and in fact some types do not show up on current tests.
Every doctor of any type has an office staff including business, nurses etc. If you call the office and ask for the results, you remind them to check on things. We have to be our own advocates and we have to push our doctors a little to keep them aware of our condition.
So call the office and ask. You should have a family doctor who coordinates things with the specialists and you have to persist in getting help. Staying at home and suffering is the absolute wrong approach to getting better.
In medicine, if our doctors don't hear from us, they assume we are OK. So make yourself heard, and if that is hard, find a friend to be your advocate to go with you and push. Giving up or giving in will just make things worse. And, if your doctor is not responsive, find another place to go.
Good Luck Russ
I know that is really hard now but things will get better! Your doctor will know what to do to help you and what's best for you.I agree with Rhanson that you have to be heard,be persistent and don't stop until you find the help that you need.
Good luck!