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 was diagnosed with MG in March of this year 2018. It’s been a lot of ups and downs. I am 52 and was healthy and active with no health issues. I got the flu in January and the droopy eye started. Got an appt at great clinic in NYC in 2 days. I am not on any meds. I am seropositive. I have symptoms of generalized but dismissed by the doc. So I’d like to ask you if as doc keeps telling me “ not related”. I agree with one post they don’t treat you until symptoms bad. So here are my symptoms. Appreciate comments on if any of you. All my blood work normal and no health issues. Been to other specialists on advice of neuro and they found nothing. Neuro keeps saying anxiety but therapist and PCP agrees I’m not having any significant anxiety enough to cause them. I actually no longer have droopy eye but other symptoms are excessive saliva, food gets stuck in throat need to swallow multiple times, tightness in chest, tired jaw at dinner, and when I exercise my biceps and thigh muscles don’t smoothly flex it’s like ripple. Doesn’t affect strength and I am not fatigued. I walk every day and work full time . Neuro says my eye would need to be droopy in addition to those symptoms because initial symptom will get worse. Thank you
the first thing that i want to mention is the most important for you, have an extented conversation with your neuro and explain complitely what is goin on with you,
do not allow them to dismiss as they dont thing they are important, insist as you are the only one whom can control your disease, but need to have a good neuro to work with..
they are 3 things that you need to know to help control of mg
NO STRESS, NO EXERCTION, AND GOOD CONTROL OF MEDS, also a change of life style helps.
when i got mg, in 2011 a the beginning my strengh was unchanged, but mg, is a progressive disease and weekness will come,
also it is important to know that they are 4 classification of mg, and every body react a different way also from meds.
do not despair as you are not alone, one thing that i learned is not to accept the words of a pcp, and therapist as their are not neuros, and only a good neuro can work with you to unverle the problems that mg can cause
best of luck (fighter)
i am jumping from your other blog, i just want you to understand that your neuro nobody else is designed to order the proper tests, one of them would be the tensilon test for mg, the only one which can realy tell you if you have it or what??? it is quite expensive and insurance companies dont like to pay, but untill you have the proper test you will be in the clouds.
you as a patient are untaitled to receive the servises that you request, so dont be shy,
if a doctor when you ask questions is luck luster to respond after the 3 same question, it is time to request another neuro.
thay are their to service us the way it sould be, even if you have to drive yourself in an emergency
best of luck (fighter)
Since I am seropositive for the acetylcholine antibody I don’t think they will order the test. My problem is neuro doesn’t think I can have any further symptoms without my eye drooping since that was my first symptom. I want to believe her since it’s top rated neuro clinic. She sees lots of MG patients. Just don’t understand why these other strange symptoms won’t go away. All other blood work normal they tested my blood for everything including lymes.
lots of the symptoms will only materialize with time, as you know that mg. is progressive, and it will take us in what i call, wild roller coast rides.
some of the symproms like druppy eye and ohters d'int materialized with me untill about 4 months on
i was strong as a ox, but eventualy sucomb to our disease, it take lots of commun sence and logic to be able to control it.
but dont forget, you are in charge of our desease,and since the desease is over 400 years old and as of today doctors drag us along, because the tru fact is that nobady dies from mg, but from the complication of our respiratory system.i know because iam bulbar 2b extreme, and in my last relapse in nov/18, my respiratory system give up on me and i olmost bought the farm.
just insist on what its going on with you and demand explanation, and they should do a meds plan with you in control,
i am lucky to work my my neuro, wich by the way is a lady, and they are more open to leassing than a male
good luck (fighter)
I went to the MD complaining of symptoms for almost 4 years. I wasn’t until I reviewed all my medical records that I identified MG. I took all my results to my PMD and told her that everything was pointing towards MG. I had visual problems, trouble swallowing, hoarseness, muscle fatigue, Shortness of breath (SOB), chewing and talking fatigue. An MRI showed my thymus gland was enlarged.
I saw my PMD again on a Wednesday and that Saturday I had an MG crisis.
MDs have such little knowledge that they can’t put the pieces together.
Find a neurologist who specializes in MG. I was diagnosed 9/2015 and had a thymectomy in 11/2015. Whenever MDs can’t figure out a diagnosis when dealing with a woman they blame it on emotions. I’m still learning a lot each day. Get to know to your body. and listen to it. Be your own warrior! God bless
I was just diagnosed with MG.
Very short story: I had the flu vaccine last October, then bloody noise and then weight lost, tiredness, no appetite and then a bad case of flu in February.
I started to have double vision at the end of may early June. It got worse. My ophthalmologist gave me temporary prisms to help with my every day life and he sent me to a neuro ophthalmologist. I had a number of tests and was diagnosed with MG. I am taking Mestinon.
My story almost the same. I got flu shot in October and the flu in January and my eye drooped and was diagnosed.
I also had a terrible weight loss too before diagnosis. Funny how our stories match up.