This is it....
Well, after over 3 months my appointment is finally here....in the early hours of Monday morning I will take the 2 hour drive for my 8am appointment (typical to have the early appointment!) to have the nerve/muscle tests Neuro #1 refused to do. So....was his assessment of me correct? Is there actually nothing "organically" wrong with me and this is this all just some figment of my imagination...or the work of a powerful mind?! I just don't know!
My gut instinct is that there is nothing else this could be - it has to be MG, nothing else fits my symptoms or explains what I am experiencing or dealing with. The majority of the time my symptoms behave so typically of MG that I have absolutely no doubt that the tests HAVE to detect the fatigueability of my muscles which improve with rest and worsen with activity.....but then there are the odd times where I expect to be good/bad and my symptoms don't seem to behave typically and I doubt everything all over again and start to wonder if it is just me somehow doing this to myself!!
Then my practical side kicks in and reminds me that this is irrelevant and regardless of whether I do or don't have MG these tests have been very unreliable for some and so there is little point in placing my faith...and hopes in them. I find myself preparing my family and friends as I explain to them that these tests are not definitive - it is not like having and x-ray, seeing a broken bone and planning how best to fix it. Thanks to you all I am not naive where this is concerned and really don't hold out much hope for the outcome....I simply cannot set myself up for that fall and as a result I feel pretty numb about it all. Occasionally a sense of panic and fear strikes through me but it is quickly replaced by the numbness, for which I am grateful - I don't know how else I could cope with this!
And when the analyzing stops - I consider the inspirational story Babette put on the discussion board about her dear friend with cancer and I remind myself that what will be, will be, regardless of how much I analyze it. I will get through the tests and I will deal with whatever the outcome is (no matter how hard it may be) and somehow I will find my way through this. I have lots of positives to focus on with amazing family and friends (who I hope will stick through this with me!) and if the tests show nothing and the Doctor cannot help me I will have to become a clean living, yoga loving, detox queen who will try every alternative therapy and remedy out there!! lol! Perhaps I should be preparing my family and friends about this......!
My gut instinct is that there is nothing else this could be - it has to be MG, nothing else fits my symptoms or explains what I am experiencing or dealing with. The majority of the time my symptoms behave so typically of MG that I have absolutely no doubt that the tests HAVE to detect the fatigueability of my muscles which improve with rest and worsen with activity.....but then there are the odd times where I expect to be good/bad and my symptoms don't seem to behave typically and I doubt everything all over again and start to wonder if it is just me somehow doing this to myself!!
Then my practical side kicks in and reminds me that this is irrelevant and regardless of whether I do or don't have MG these tests have been very unreliable for some and so there is little point in placing my faith...and hopes in them. I find myself preparing my family and friends as I explain to them that these tests are not definitive - it is not like having and x-ray, seeing a broken bone and planning how best to fix it. Thanks to you all I am not naive where this is concerned and really don't hold out much hope for the outcome....I simply cannot set myself up for that fall and as a result I feel pretty numb about it all. Occasionally a sense of panic and fear strikes through me but it is quickly replaced by the numbness, for which I am grateful - I don't know how else I could cope with this!
And when the analyzing stops - I consider the inspirational story Babette put on the discussion board about her dear friend with cancer and I remind myself that what will be, will be, regardless of how much I analyze it. I will get through the tests and I will deal with whatever the outcome is (no matter how hard it may be) and somehow I will find my way through this. I have lots of positives to focus on with amazing family and friends (who I hope will stick through this with me!) and if the tests show nothing and the Doctor cannot help me I will have to become a clean living, yoga loving, detox queen who will try every alternative therapy and remedy out there!! lol! Perhaps I should be preparing my family and friends about this......!
Replies
Good luck, Monday. I will be thinking of you. Every time I hear from someone like you still undiagnosised I am so glad I got my diagnosis within 3 days of becoming symptomatic. I hate the disease but at least I know my enemy.
I hope you get some answers! And I hope you can have some peace of mind, either way. I\'ll be thinking of you, and looking forward to hearing what happens.
You can get a doctor to treat you after a Mestinon trial. You need to say what takeaways you want from appointments. One thing that has helped me is telling myself that I WILL get down to the bottom of things and explaining that I need the help of the neuro to do so. We are most invested in getting healthy, and sometimes we have to remind neuro\'s that this is what we are after. Good luck and big hug!
A lot of us have learned here how to be our own advicate. Be strong in your points and don\'t be afraid to ask why? in a calm, nice way. I hope you have an appointment with someone who will listen to what you say. I will be thinking of you and looking for your post for the outcome of the appointment. Good Luck!
I just read this . WOW....Your story IS so powerful. Thanks for expressing it!
I can really relate to your own doubts about your condition & this is why I know I have something MG like - I have been searching for 20+ years and this IS the first time I can relate to the feelings & fears and symptoms of others?!