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? As you all know I've had a rollercoaster week....and with that comes the mental battle, and for me, old habits really do die hard!!
When I saw my first Neuro about 10 years ago when this started I was diagnosed with "Chronic Fatigue Syndrome with Psychological Issues". After my illness thankfully became more mild I spent years beating myself up for being "weak" and believing that it was all in my head and feeling awful for what I had put my family through etc etc. From then on whenever I felt weak/ill I would get angry with myself and convinced myself that I had anxiety. I spent years researching anxiety and trying everything to get rid of it....I could never understand why nothing worked...until my symptoms flared up again badly a year ago! I then found that my "Anxiety" was always bad when I felt ill/weak....yet, on better/stronger days I was pretty much fine! Despite seeing the same first Neuro last year when things flared up again and this time my diagnosis (for the same symptoms) was "Functional Disorder virally triggered not stress related" ?!?! I still feel the effects of his fist "diagnosis" and dismissal! My current Neuro has never once questioned me or implied it was in my head and immediately said I have MG but I think his off-ish-ness this week has really thrown me and made worry that my worst fear will happen and he will change his mind and stop trying to help me. I know I am probably being over sensitive here but I think the years of doubting myself has become an automatic response/way of thinking....along with being angry and doubting myself over my illness! Even in this bad flare up, the fact that I am having to take time off work is making me beat myself up and berate myself for not just snapping out of it and getting back to work! The fact that my mestinon worked great for a while and then stopped makes the doubts worse as I wonder what this means - its only been a couple of days, my decision to drop back to my lower dose of 60mg 4-5x per day does seem to be helping slowly. I seem to be getting back to the point I was at before the increase - my weakness is helped but not resolved by the mestinon doses but the chest pressure/breathing/paleness and general overwhelming fatigue and ill feeling is improving ....could this be coincidence...did I have a virus, did the mestinon dose make me worse....who knows?! And lets face it - I'd be doubting myself whatever happened! lol!! .....I think I need the positive test to validate my diagnosis more than my Neuro does at times (except for the way he was this week of course!!!!!!)
I know we all feel misunderstood at times by someone whether its Doctors, family or friends and I know am not alone in the battle for diagnosis as many of you have had enormous struggles there too....but do any of you struggle with letting the old stuff go?? How can one Doctor make such an impact on me and affect my life so much?? That same Doctor who later changed his diagnosis?? And leave me constantly fearing the Doctor I have, now who has never doubted or questioned me (although he has upset me a little this week!) will change his mind and dismiss me because of the first Doctor! The years of that old, negative mindset creep back in with no need for invitation and I doubt myself over and over again!! I hope the day comes where I can control my symptoms and prove to myself that I can trust my body....and above all I hope the day comes that I can stop doubting myself.
Thanks again everyone - having you all to vent to and to know that you can relate to my symptoms...and that I am not completely crazy is the biggest blessing ever....I am so grateful to have you all. x
When I saw my first Neuro about 10 years ago when this started I was diagnosed with "Chronic Fatigue Syndrome with Psychological Issues". After my illness thankfully became more mild I spent years beating myself up for being "weak" and believing that it was all in my head and feeling awful for what I had put my family through etc etc. From then on whenever I felt weak/ill I would get angry with myself and convinced myself that I had anxiety. I spent years researching anxiety and trying everything to get rid of it....I could never understand why nothing worked...until my symptoms flared up again badly a year ago! I then found that my "Anxiety" was always bad when I felt ill/weak....yet, on better/stronger days I was pretty much fine! Despite seeing the same first Neuro last year when things flared up again and this time my diagnosis (for the same symptoms) was "Functional Disorder virally triggered not stress related" ?!?! I still feel the effects of his fist "diagnosis" and dismissal! My current Neuro has never once questioned me or implied it was in my head and immediately said I have MG but I think his off-ish-ness this week has really thrown me and made worry that my worst fear will happen and he will change his mind and stop trying to help me. I know I am probably being over sensitive here but I think the years of doubting myself has become an automatic response/way of thinking....along with being angry and doubting myself over my illness! Even in this bad flare up, the fact that I am having to take time off work is making me beat myself up and berate myself for not just snapping out of it and getting back to work! The fact that my mestinon worked great for a while and then stopped makes the doubts worse as I wonder what this means - its only been a couple of days, my decision to drop back to my lower dose of 60mg 4-5x per day does seem to be helping slowly. I seem to be getting back to the point I was at before the increase - my weakness is helped but not resolved by the mestinon doses but the chest pressure/breathing/paleness and general overwhelming fatigue and ill feeling is improving ....could this be coincidence...did I have a virus, did the mestinon dose make me worse....who knows?! And lets face it - I'd be doubting myself whatever happened! lol!! .....I think I need the positive test to validate my diagnosis more than my Neuro does at times (except for the way he was this week of course!!!!!!)
I know we all feel misunderstood at times by someone whether its Doctors, family or friends and I know am not alone in the battle for diagnosis as many of you have had enormous struggles there too....but do any of you struggle with letting the old stuff go?? How can one Doctor make such an impact on me and affect my life so much?? That same Doctor who later changed his diagnosis?? And leave me constantly fearing the Doctor I have, now who has never doubted or questioned me (although he has upset me a little this week!) will change his mind and dismiss me because of the first Doctor! The years of that old, negative mindset creep back in with no need for invitation and I doubt myself over and over again!! I hope the day comes where I can control my symptoms and prove to myself that I can trust my body....and above all I hope the day comes that I can stop doubting myself.
Thanks again everyone - having you all to vent to and to know that you can relate to my symptoms...and that I am not completely crazy is the biggest blessing ever....I am so grateful to have you all. x
I just wanted to give you a hug and that I totally feel where you are coming from. While there are some wonderful doctors there are also some who would be better fixing cars than people.
It amazes me that some doctors are so quick to blame it all on the patient when they are unable to make the diagnosis. With MG, we are going to find some doctors that will do that, considering that we are not only ill with a very rare disease that takes on many symptoms that are not the same for everyone, but we are also stressed to the limit, and that shows. As the patient, we are looking to the doctor to help us, get us a diagnosis and a treatment that works. That isn't so easy for the doctors when it comes to MG.
The problem is, we start to question ourselves and in doing so, we become hard on ourselves. It is only natural, and human to do so. Some may become angry, others depressed and others may jump to that happy land of denial. I did all of the above, but I do enjoy that happy land of denial the most. That is just me.
Once we realize that we really are sick and not suffering from some psychosomatic (all in you head) illness, then it is time to LET GO OF ALL THE NEGATIVE. It is easier said than done. The negative feelings, the questioning yourself and the diagnosis as well as the doctors behaviour have a funny way of creeping back especially when we are not feeling as well as usual. The catch is, if we don't let go, we are using up that much needed energy on the hurt we feel, when we really need it to get through the day!
There are a lot of methods that can be used to let go. They can include prayer, meditation, imagery, giving thanks and the habit of searching for the good in a situation. There are many articles written on the net. Find a method that works for you. I tried many before I found the one that fit me, but I did find it and now the frustration I used to feel rarely shows up and I am finding that I am better able to listen to my body, trust it and communicate that with my doctors.
I send hugs. Deb
l tend not to do anything until l'm so over the nagging that l just relent.All because of a Neuro who said l had conversion disorder after seeing me for one half hour visit,and his reasoning "l was indifferent to my own well being".At the time l was so over myself and this disease,the hospital stays, the never ending medication schedules that l didn't care,l just didn't want to know about any of it anymore.He was very angry at my leave me alone attitude, and decided someone who was truly sick would not behave in such a fashion ,you know cause people tanked on steroids and a bucket load of other crap have no reason to be sad or angry.So there was my fluro green psych warning sticker stuck to every record known to man,to alert every future medical team of his findings.(it did not matter that l had positive testing done or symptoms so out of the ball park it was almost laughable).
You know l did not help my cause when l told him and his sidekick to F#@% off.But it did take years for that sticker rampage to be removed.
l still have left over remnants of that,because even though its not there in fluro green right on the front of my chart its still inside it,for anyone to read,and any bored medical staff who is willing to go back that far in my tomb of a file will get there,and you see it on their face that little bit of doubt.
Old habits do die hard and sometimes our emotional survival instincts kick in and so we don't always treat our selves right.
So know that...l know l do it to me all the time....so big hugs .
Amanda