[CowgirlUp]

I'm ready to beat the crap out of my neuro. I've been trying to get the Rituxan infusions set up for the last three weeks. First he FORGOT to put in the order. Then he put in the order for me to go to a center I already told him TWICE I wasn't going to go to. 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. Rituxan is a chemo med that often makes people have fever and chills and nausea, which makes it not even safe for me to drive myself that far. There's an infusion center that is literally about 10 blocks from my house, and it's affiliated with the same university medical center my doc is with. So, I call on Monday to tell them to send me close to my house. I had to talk to SIX different people to try to relay this message to my neuro. And remember I had already told him twice before. I didn't hear back from them, so I called again this morning and STILL nothing. So, when I'm at pharesis today I try talking to the docs and nurses there to see if they can help me. They made some calls and found out some information. Oh, wait for it . . .

The reason the neuro hasn't set me up at the center close to me is because, oh you're going to love this, he DOESN'T LIKE TO USE THE COMPUTER SYSTEM THEY JUST STARTED USING TO INPUT ORDERS!! So, instead of doing his damn JOB and getting me what I need, he's being a whiny little boy who's trying to make me go someplace that's very inconvenient for me all so he doesn't have to input the medical order into the computer!

Can you tell that I'm angry and frustrated???? And now, of course, he's on vacation so I have to wait at least another week to see if he'll stop being such an *** and put the freaking order in already. If he won't, my pharesis doc said that he would try to do it for me. By then I'll have waited almost a month to get this going.

I'm sorry to whine so much about this, but I don't feel well, and I've spent hours on the phone trying to get some information and gotten nothing but the run around. I'm very grateful to the pharesis people who advocated for me today, but they shouldn't have had to do so, and the fact is, STILL nothing has been done. I would change docs if I could, but as you all know, neuros who know something about MG don't grow on trees. MEH!! Again, sorry to whine. But I just really needed to tell someone or I'm just going to start crying or screaming or breaking things or possibly all three. Or I really might just smack the crap out of my doc--and I'm pretty sure I would NOT look good in one of those orange jumpsuits . . .

Thanks for listening.

[TxSimon]

I can tell you are upset and don't know any advice to give you other than to just hold off smacking the neuro!!! That for sure wouldn't help matters other than to make you feel better.........but then the cuffs get thrown on and then you have pain in your wrists....LOL! Hang in there and hope all gets better for you soon.
Hugs,
Simon

[Jomar]

Doesn't he have someone in his office to input that stuff for him??

Arrgghh nothing like the run around!!

[CowgirlUp]

Originally Posted by Jo*mar

Doesn't he have someone in his office to input that stuff for him??

Arrgghh nothing like the run around!!

That was my question. Apparently not, or he doesn't let them, or something. Who knows. And I forgot to say that he's actually trying to send me outside of the medical system I'm in, which means the place won't have my medical records and the records from the Rituxan infusions will have to be sent over to my doc instead of everything being in one place. The nurse told me that the system is new and he doesn't like it and won't use it so he's actually sending people out to their competitor instead of just learning to use the system! So much for, oh you know, the apparently old fashioned values of customer service and patient care!

[redtail]

I really feel you, I mean how dare a Dr make you suffer because he doesn't want to use a new computer system. GRRRRR.

If I have anything important to relay to my neuro, I make sure I talk to his secretary, she is very competant and ALWAYS gets things done.
I have no answers for you, only Iam glad you can come here and vent, oh and by the way you arn't whining!!!!! just venting your feelings.
take care
Kate

[rach73]

A one word answer to your question......

Probably! LOL

I hope you manage to get it sorted out soon

Love
Rach

[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.

[Joanmarie63]

yup, jail time BUT.. hehehe I bet it would be worth it, besides, 3 hot meals a day, no bills to pay, free cable, free internet.. hey wait.. I might just go smack mine too...LOL

[jana]

You know how some people who were supposed to be in the World Trade Center had things "come up" -- stuff that kept them from getting to work on time -- things that inadvertantly saved their lives?

If there are kinks, glitches, and wrinkles in getting Rituxan..........maybe the time is not right. God whispers to some people -- He has to SLAP me in the face!! CowgirlUp, what about YOU???

[CowgirlUp]

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.

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.