Quote:
Originally Posted by Neofate
I can't get into my preferred neurologist for quite some time -- so I am curious what things can you list that are nearly universal that most all MG'ers experience and when they do X, Y, or Z cause some sort of undeniable effect?
I want to test a bit of this , (safely) , on myself.
I've seen the looking up test, and I 'feel' like I am failing it -- but it is really hard to determine on your own.
I've held my arms out straight, and they feel like they want to come crumbling down but I can 'tough it out' for the alloted time that would be 'normal' or passing.
Just curious what things you guys know from your experience that are common and will most always happen.
I do not believe I am in any danger of respiratory 'crisis' or the like -- as I've had these symptoms going on 6 years or so, and nothing has ever lead to me noticing I couldn't breath.
Thanks,
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Hi,
First, its great that you do not have any life-threatening symptoms.
Second, my advice is not to "rehearse" for your physician.
A good physician will know what questions to ask and how to pick the needles from the haystacks.
Sometimes it may take a while, but if you come to him with a list of things that seem to fit, more likely than not , he will find it hard to make sense of it, or feel that you are trying to lead him in a certain direction.
My advice is to ask yourself what bothers you most, and concentrate on that first.
Come to him as you would come to a knowledgeable friend that you think could help.
If you feel its appropriate and he seems attentive to what you think could be going on (after all, after 6 years it is quite likely that you have searched it out for yourself), then you can gently mention that you thought at least some of your symptoms could fit MG.
And most important during the visit in his clinic, and the way he responds, ask yourself if you feel he/she is the right physician for you.
Some physicians don't know how to deal with a patient with a "mystery illness" and others will become your partners and do their best in working out the best management approach.
After all, what you are really interested in is not the fancy name of you illness, but to receive treatment that will make you better. So, finding someone who will make a brilliant diagnosis, but not do much from there is not what you are looking for.
Hope some of this helps,