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...
Hi everyone - I hope you are all doing ok....sorry to go on a rant here as I know you are all dealing with the same and even worse than I am...but do you ever just feel trapped in this big mess?!
I went to my GP, he shared my Frustration with my Neurologists "Clinical Diagnosis" and lack of treatment plan! He said Steroids are not the worst thing on a diagnostic trial...and are certainly more favourable than the Cosmetic Surgery my Neurologist suggested!! (Still can't get my head around that one!) He is happy to refer me to another Neurologist...it is just whether I want to put myself through it given all of the tests being negative! He was interested in my findings on Lyme Disease and I had the test this morning - if I am honest, I can't even begin to hope that the last 10years could boil down to something so simple....and in my gut, I don't see it being my answer...but at least I have tried....and am trying everything to get an answer and ultimately myself well!!
(Here comes the rant...!) During this visit to my GP, as supportive as he is - I said that if I were a Dog, I feel a vet would have tried something by now...either steroids or antibiotics...and yet, as a human I am left with a rapidly decreasing quality of life and function level...no matter how hard I try to keep strong. I feel completely trapped in my own life and it has suddenly dawned on me today that I find myself making allowances for everyone around me feeling guilty for the burden that I am...and yet, I make no allowances for my feelings?! I make allowances for the Doctors and almost feel guilty for coming to them with symptoms they cannot explain through testing and feel that I should scurry away and not make a nuisance of myself. I make allowances for my partner and the long hours he works (out of choice for his business) and feel guilty for not being the partner he once had and for all of the things I cannot do....yet, I disregard that he is not here and helping me as my legs become weaker and that my parents are doing everything from walking my dog to taking my girls to/from school. I feel guilty for the burden I am to my parents, and whilst they love me and my girls, I wish their involvement wasn't so enforced due to my deterioration.
Today I am angry and I am seeing through everything to the harsh truth I clearly hide from myself - that I resent it all! I hate not being independent, I hate having to ask/rely on others to help me and the girls get to places or to do things, I hate that I feel guilty for this illness that I cannot control and make excuses for everyone without thought for what my needs are. I am resigning myself to being insignificant and that my needs/feelings do not matter and I hate that this illness makes me feel like I have to apologise for my existence!
Trapped and Frustrated.....and no logical way out...is this my life? I am a believer that everything happens for a reason and that even the horrible things in life teach us valuable lessons...and I refuse to believe that there is no answer for me and no way to get (at least some) independence and quality of life back...but the longer it goes on I wonder at what expense to my inner self and my family? There has to be a way.....God help me there has to be a way!
Sorry everyone...I just needed to get it out and I don't think anyone else would understand! Thanks for your time - I think you are all amazing :)x
I went to my GP, he shared my Frustration with my Neurologists "Clinical Diagnosis" and lack of treatment plan! He said Steroids are not the worst thing on a diagnostic trial...and are certainly more favourable than the Cosmetic Surgery my Neurologist suggested!! (Still can't get my head around that one!) He is happy to refer me to another Neurologist...it is just whether I want to put myself through it given all of the tests being negative! He was interested in my findings on Lyme Disease and I had the test this morning - if I am honest, I can't even begin to hope that the last 10years could boil down to something so simple....and in my gut, I don't see it being my answer...but at least I have tried....and am trying everything to get an answer and ultimately myself well!!
(Here comes the rant...!) During this visit to my GP, as supportive as he is - I said that if I were a Dog, I feel a vet would have tried something by now...either steroids or antibiotics...and yet, as a human I am left with a rapidly decreasing quality of life and function level...no matter how hard I try to keep strong. I feel completely trapped in my own life and it has suddenly dawned on me today that I find myself making allowances for everyone around me feeling guilty for the burden that I am...and yet, I make no allowances for my feelings?! I make allowances for the Doctors and almost feel guilty for coming to them with symptoms they cannot explain through testing and feel that I should scurry away and not make a nuisance of myself. I make allowances for my partner and the long hours he works (out of choice for his business) and feel guilty for not being the partner he once had and for all of the things I cannot do....yet, I disregard that he is not here and helping me as my legs become weaker and that my parents are doing everything from walking my dog to taking my girls to/from school. I feel guilty for the burden I am to my parents, and whilst they love me and my girls, I wish their involvement wasn't so enforced due to my deterioration.
Today I am angry and I am seeing through everything to the harsh truth I clearly hide from myself - that I resent it all! I hate not being independent, I hate having to ask/rely on others to help me and the girls get to places or to do things, I hate that I feel guilty for this illness that I cannot control and make excuses for everyone without thought for what my needs are. I am resigning myself to being insignificant and that my needs/feelings do not matter and I hate that this illness makes me feel like I have to apologise for my existence!
Trapped and Frustrated.....and no logical way out...is this my life? I am a believer that everything happens for a reason and that even the horrible things in life teach us valuable lessons...and I refuse to believe that there is no answer for me and no way to get (at least some) independence and quality of life back...but the longer it goes on I wonder at what expense to my inner self and my family? There has to be a way.....God help me there has to be a way!
Sorry everyone...I just needed to get it out and I don't think anyone else would understand! Thanks for your time - I think you are all amazing :)x
I can not believe that your neuro said for you to have plastic surgery! What a _______! I understand how hard it is to change doctors. Can you have your files just moved to your new neuros office OR it might be better to go to the new one from scratch? It seems that if you already had the tests that perhaps someone with knowledge of MG will give you a clinical DX. If it was me, I think I would have the files moved and then if the new neuro wanted to do more tests, that I would agree. That's just me.
We all understand your frustrations. It is so hard being limited in our activities. I am very independent myself; my husband never complains about doing dishes, laundry, cooking or shopping. If I start to complain about my not being able to help more, he just says "This is the way that it is" so I totally get that. Maybe you could talk to your partner and your parents about how you feel. Sometimes members here let their families read our posts. It really helps people understand about MG.
You are welcome to rant anytime. Hug!
If I were you I would go to another neurologist pronto. Give yourself a few days and you will be ready for all the questions and tests that come with that - we are much stronger and resiliant than we give ourselves credit for sometimes!
I, too, am seronegative and went round and round with the neuro 20 yrs. ago with him saying only ocular and me saying I feel it all over.
Hang in there and take it one day at a time - it WILL get better!
Sending a hug your way
You are understandably frustrated!! It took four years of waiting, testing, etc... to get to the MG dx. I know how hard it is when you
are suffering and the drs. are still not sure of things. I'm so sorry.
Please know you are understood and prayed for today.
Don't give up!
HUGS,
Carly