Quote:
Originally Posted by alice md
sorry, if this sounds unsymphathetic, but I personally would not smack him and actually make sure that he is healthy and well for many years, if I had right from the begining, a neuro that would diagnose and treat me, like yours does, having a seronegative atypical MG.
I assume that he is probably not very young and finds it hard to work with this computer system. he is probably right, as too many physicians now days are treating the computer instead of their patients. have you seriously discussed his reasons to prefer the other center? maybe he thinks that there is better and more personal care there? maybe he is more happy with the way they treat his patients?
I realize that -"It's at least a 30 minute drive each way and I don't have anyone who can drive me there once a week for 4 weeks". and I can appreciate the difficulty in that, but there are some who have to go to another country or state in order to recieve anything that resembles reasonable care.
and some who don't even get mestinon, not to speak of rituximab.
some who are sent for a consultation with a world leading expert, and after a 4 hour back and forth drive, from which it takes them a long time to recover, come back with a piece of paper saying that they could have myasthenia, and it has not been ruled out.
I know how hard it is to deal with this illness, but I think you should concentrate on the medical care and not relatively unimportant details.
and it would be good if you could find someone to accompany you there any how. a friend or relative, that could help you deal with it all, at least for the first time.
and stay on good terms with your neuro. I am sure there are quite a lot of people who have been writing posts on this site, that would have been glad to be under his care, with all the inconveniencies that go with it.
take care, and most importantly hope this treatment really helps,
for a happy and better 2010
alice.
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REALLY ALICE???? You don't sound even remotely SORRY that you sound unsympathetic. And I'm sure you're not. And you're entitled to your feelings, but SO AM I. No one told me that the real purpose of this forum is to stage some kind of contest to see who has the worst situation and that only those who WIN have any right to post about their frustrations and feelings. I'm SO SORRY that I didn't follow your rules. If you had really read my post you would have seen that I said I was whining. NO where did I say that it was the end of the world or worse than what anyone else goes through or any of the other things you are choosing to attack.
You know NOTHING about me or my life or my situation. So let me fill you in on a few things. I didn't have a doc from the beginning--it took over a year and a half to find one and this one is the third one I've had in the last year and a half because the other two left the clinic. And I've already been told that this guy is also temporary and I'll likely have to switch AGAIN in June. No, he's NOT older. He's my age--in his 40's. And no there is no other reason. I heard this information from the actual people who work at the infusion center that this is what he's been doing since they instituted the new computer system that he simply refuses to use. Not that ANY of this is any of your business or should matter. I have the right to my feelings and thoughts and you do NOT have the right to tell me how I should or shouldn't feel. And thanks so much for telling me what is relevant and what is an "unimportant detail." I'm not sure who you think you are, but I know who you are not--someone from whom I'm going to take lessons on what I should and shouldn't attend to. I don't HAVE any relatives and my friends have their own lives--there is no one who can go with me. I have gone to EVERY doctor's appointment and about 98% of my treatments ALONE. I live mostly alone since my roommate works out of town about 3 weeks out of the month. There, does that somehow elevate my misery enough in your eyes to warrant some kind of support??
I came here to both get and give support and I think I have done that. I didn't come here to be scolded like a child and to be told that I'm somehow not grateful enough or that because my situation isn't as bad as someone elses that I have no right to be frustrated or angry or to vent. Now it feels like I need to leave and not bother to ever post again. Because I do not want to come back here again and find that someone has posted something that is telling me that my thoughts/feelings are wrong and is an obvious attempt to make me feel guilty because I may be better off in some ways than are some others (which I will freely admit is true by the way). I REALLY don't need that on top of the rest of the stuff I have to deal with. Thanks to all of you who have been so kind and supportive during the brief time I've been on this site. I truly do appreciate it. There really are many wonderful and supportive people and I'll miss that. I had been so isolated and alone with this disease for so long that I thought this would be a godsend to have a place where I could vent when I needed to and also to try to provide support to others. But I guess that's not how it works. I do wish you all a really happy New Year and maybe I'll see you around some day.