Do you think I'll go to prison if I smack my neuro??
 

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 . . . :eek:

Thanks for listening.

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

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!

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

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

Probably! LOL

I hope you manage to get it sorted out soon

Love
Rach

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.

:D yup, jail time :D 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 :wink:

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???

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.

Well I, for one, got a good belly laugh out of this. I hope you don't mind! But I needed a good laugh. :)

I suppose your story would be downright shocking to most people who have never had to deal with neuros. But for most of us it's how the world works, unfortunately.

Keep trying, keep pushing them. You're right, this should make a normal person mad. Like Alice, I'm a little in awe that you're getting treatment. But ya, I sure understand that smacking urge. :Grin-Nod:

I think Alice was just trying to give some perspective with the best of intentions. I think everyone here, including you MK, are trying to do their best. It's hard communicating with text. People are easily misunderstood. I can assure you though that Alice is a kind and caring person.

Ally

Thank you Ally. I appreciate your kind response. Hopefully you will understand if I respectfully disagree with you here, and forgive me if I'm not exactly, how shall I put this, feeling the caring you mention. I also will not belabor the point, though, either, as I have said what I needed to say.

Thanks again,

MK

Hi Cowgirl,

I am glad that instead of smakcing your neuro, you found me to smack instead.

and yes, you are right that your life circumstances are none of my damn buisness, but on the other hand I have to admit that I am a bit tired of talking to people, who I really know very little about. putting a lot of efforts into finding the way to help them with advice and support, and sometimes sharing my own experiences and emotions with them, not really knowing who they are and what they are going to do with that. (and I think that you can go and see the respiratory thread and understand where I am coming from).

no, I do not think this is a contest of how misserable you are. and if it is I definitely do not want to be in this contest and clearly do not want to be one of the winners. and don't think I am. you too know very little about the circumstances of my life, but I can tell you that apart from this ******illness, and the way it was managed until now, I see myself as an extremely fortunate person, in almost every aspect of life.

over the last year I have been trying to help a patient, who became with time a very dear friend, to recieve the proper medical care that she deserves. and despite all my efforts, nothing has been done so far. she is only recieving mestinon, despite severe dissabeling symptoms.

I have also been trying to help other people, and realized that there is very little I can do, other then tell them to trust themselves and what they feel, more than what an uncaring physician that sees them briefly in his/her office.
and that if I really want to do something I need to try and change the way this illness is being seen and managed, by those who are supposed to take care of those patients. (something that I am now trying to do).

and like Ally said, I was just trying to put things in proportion for you.

and I think you are entitled to feel this frustration, and I did not say you didn't. I was not referring to the way you feel, but to what was happening.


and you say- 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. and I can understand your anger, and feel free to ignore all of my advice, or any part of it that you want.

and last but not least, I do care about you, or I wouldn't have bothered to answer your post. and I think you are a very caring and sensitive person, and I am really sorry for what you have to go through. and I too had times when I wanted to smack , or do something unpleasant to my neuros, so that they will feel just a little bit of what they have been putting me through. and sometimes I actually did, by writing them very angry, but well phrased letters, that at least made me feel better. some which I actually sent them and quite a few that I didn't ( and I will be glad to share some of them privately with you, if it will make you fell better).

also, reading what you wrote now, I can understand the feeling of frustration. it sounds like you don't have any one that is really there with you, not your neurologist, that just sees you as a temporary patient, not your friends, who have their own life, although I am sure that if it was the other way around you would have been there for them.

when you say I have gone to EVERY doctor's appointment and about 98% of my treatments ALONE. I think of how lonely this illness can be even when you are surrounded by people who really care about you, and how lonely it is for you. and maybe this is putting things in proportion for me, and thanks for that.

so please, don't leave this site. if you feel that my presence here is bothering you, I promise to never respond to any of your posts again.


I have attached something that I wrote about loneliness a few years ago, just so that you see that I can understand.

Loneliness

There are not many things that can cause you to feel so lonely, as when you are surrounded by those that you love, and realize that they do not have a clue of what you are going through.
It is very easy to understand and emphasize with someone who is lying in a hospital bed, feeling miserable, having IV lines and drips. It is much less easy to understand the daily struggle involved in dealing with a chronic debilitating illness. People may even notice your hardship, but it is hard for everyone, and after all you have accomplishments just like they do, and maybe even more then some, so what's so hard about that.
They see you running in their race track. They see you even get to the finish line, among the first, every now and then. They do not notice the weighs that are tied to your legs. They do not realize that the 100 meter race that you share with them is a marathon for you. They only see you arrive on the finish line with then. They may even congratulate you for that. They will happily go to celebrate their accomplishment in the pub, and you will go to rest for the next few days.
They do not understand that winning a race for you, means mixed feeling. On the one hand you are very happy with your accomplishment, just like they are, but on the other hand, it means that you will have to participate in the next race, instead of dropping out. It means a new struggle. Can they run one marathon after the other?


alice

Alice,

I appreciate your response, and wanted to respond myself to what you have to say, so I have done so below.

I am glad that instead of smakcing your neuro, you found me to smack instead.
I'm sorry if it felt that way, as I didn't mean to "smack" you. I felt smacked by you and wanted you to know how I felt.

and yes, you are right that your life circumstances are none of my damn buisness, but on the other hand I have to admit that I am a bit tired of talking to people, who I really know very little about. putting a lot of efforts into finding the way to help them with advice and support, and sometimes sharing my own experiences and emotions with them, not really knowing who they are and what they are going to do with that. (and I think that you can go and see the respiratory thread and understand where I am coming from).
Yes, I do know where you are coming from as I did read that thread before and you and I have corresponded a bit.

no, I do not think this is a contest of how misserable you are. and if it is I definitely do not want to be in this contest and clearly do not want to be one of the winners. and don't think I am. you too know very little about the circumstances of my life, but I can tell you that apart from this ******illness, and the way it was managed until now, I see myself as an extremely fortunate person, in almost every aspect of life.
It's true that I don't know a lot about you and I haven't said anything about your circumstances, unlike you did about mine. I'm very glad that you feel like you are fortunate. I do as well in most areas of my life--I have much for which to be thankful.

over the last year I have been trying to help a patient, who became with time a very dear friend, to recieve the proper medical care that she deserves. and despite all my efforts, nothing has been done so far. she is only recieving mestinon, despite severe dissabeling symptoms.
I have also been trying to help other people, and realized that there is very little I can do, other then tell them to trust themselves and what they feel, more than what an uncaring physician that sees them briefly in his/her office.
and that if I really want to do something I need to try and change the way this illness is being seen and managed, by those who are supposed to take care of those patients. (something that I am now trying to do).
I have no doubt that you try to help people. I know you do. But I think you were somehow taking out your frustration on me--by implying that I should just be thankful for what I have and just shut up about what isn't working. THAT is the part that I didn't appreciate. I felt hurt, angry and humiliated by what you wrote. Just because I am getting better treatment than your patient doesn't mean I don't have feelings about what's happening or feel just as helpless in my situation as you may in yours. And please know that I really do get what it's like to try to advocate for patients and have it go no where and have to just sit back and watch someone get worse. This happens to me with my pts as well. I KNOW how frustrating it is!

and like Ally said, I was just trying to put things in proportion for you.
and I think you are entitled to feel this frustration, and I did not say you didn't. I was not referring to the way you feel, but to what was happening.
Please understand that I'm only speaking for myself here, but if you read my post, I didn't ask for advice, or help or to have my situation put into perspective. I didn't want that. I just wanted people to HEAR me, not help me. There IS no help for this situation. And you ASSUMED you knew about what was happening when really you didn't, and then responded from that assumption, which also bothered me because those are the comments you made that made it seem like I'm really lucky to have what I have and that the driving issue is somehow an inconsequential detail, etc. Those things really hurt me.
I know you want to help, I really do. And I know that you DO help! But perhaps you may want to consider that helping can consist of just listening and saying, "wow, that sucks." And you may want to consider that the way things seem to you may not be how they really are. And that when you start giving advice or trying to get me (and perhaps others, but I don't want to speak for them) to have a different perspective that what it can feel like is you saying "you shouldn't feel the way you do because . . ." or "you should do this and that and NOT do this other thing" which FEELS like you're just saying, "You're WRONG in what you think/feel/do." I'm not saying that's your intention, but what it felt like. (Hmmm . . . and here I am trying to give YOU a new perspective . . . should I be practicing what I preach??)


and last but not least, I do care about you, or I wouldn't have bothered to answer your post. and I think you are a very caring and sensitive person, and I am really sorry for what you have to go through. and I too had times when I wanted to smack , or do something unpleasant to my neuros, so that they will feel just a little bit of what they have been putting me through. and sometimes I actually did, by writing them very angry, but well phrased letters, that at least made me feel better. some which I actually sent them and quite a few that I didn't ( and I will be glad to share some of them privately with you, if it will make you fell better).
Thanks for saying that you care--I appreciate that. I also appreciate that you may continue to think that may be a caring and sensitive person. :rolleyes: I am perhaps too sensitive and this makes me react when I feel hurt and humiliated as I did in this situation. And I appreciate your willingness to share your letters with me.

also, reading what you wrote now, I can understand the feeling of frustration. it sounds like you don't have any one that is really there with you, not your neurologist, that just sees you as a temporary patient, not your friends, who have their own life, although I am sure that if it was the other way around you would have been there for them.
Yes, the situation with the docs is very frustrating. And while my friends do care, they do have their own lives. And yes, I have ALWAYS been there for them, because I realize perhaps more than they do how important that is.

when you say I have gone to EVERY doctor's appointment and about 98% of my treatments ALONE. I think of how lonely this illness can be even when you are surrounded by people who really care about you, and how lonely it is for you. and maybe this is putting things in proportion for me, and thanks for that.
I have literally gone to every MD appt for the last three years, including all of my appts with the surgeon prior to the thymectomy, by myself. With all of the plasma pharesis and IVIG and other treatments I've had, I've had someone with me a total of 4 times. So, perhaps you can see why it upset me so much when you implied that the drive time is somehow an inconsequential detail and that I should get someone to come with me. These ARE medical issues to me and not inconsequential to me. If this treatment makes me sick, it would be a very real problem to have to drive the 20 miles to my house, which in the afternoon traffic has sometimes taken me an hour from that same area.

so please, don't leave this site. if you feel that my presence here is bothering you, I promise to never respond to any of your posts again.
Your presence doesn't bother me, and as I said, and I really meant it, you have every right to your own feelings and probably more right than I do to be here. And you have every right to respond to whatever you want to. I would just ask that perhaps you consider what I have said about not making assumptions about what's true for someone else, and that sometimes it's more help to NOT try to help. :o)

I have attached something that I wrote about loneliness a few years ago, just so that you see that I can understand.
Thanks for sharing this with me. I can relate to this as I am also a professional who works with people who have NO idea what I have to do to try to keep working.

Alice, I appreciate your thoughtful and kind response. I really do. I apologize if it felt like I was smacking you. Please understand that I really did feel like you were attacking me and telling me that I had no right to feel what I do because my situation is better than the situations of some other people (which again I freely admit is the case), and I felt very misunderstood and hurt in terms of my own situation. I couldn't let that stand. There is no one here to take care of me except me and so I'm used to having to stand up for myself. I believe you if you say that wasn't your intention. I take responsibility that those were my feelings and I do own them.

If we can Alice, I would like to have any other messages between you and I about this particular issue to be by private message, if that's OK with you. And if you don't want to reply at all, that's fine as well. Whatever works for you, works for me. I do hope that we can be OK . . .

Thank you again. I truly do appreciate your time and effort. I hope that the New Year brings you all good things.

Cowgirl, I really feel for your situation and this is a great place to vent. I hate MG and I get frustrated at my doctor too.

(Now I am going to vent a little) I am really angry at my doctors accountants who keep sending me bills after I pay them in full on every visit. Why do they keep sending me bills? Of course they say they will fix them when I point out the mistakes and they admit right away that there was a mistake. But I keep getting bills from them and it causes me great stress! They are starting to add interest to my "past due" amounts that I don't owe!!!

I wanted to add that when I read what Alice wrote I cringed (I am not trying to cause trouble or hurt anyones feelings, but I feel it is necessary to say this). I too have felt hurt by a few things said here and considered leaving because I don't need added stress in my life...but still I stay since this is a great place to find support. I stop posting for a short time, eventually forgive, and then join in again (this has happened twice).

Cowgirl, I too am very lonely with this disease. I relate to what you said about your doctor. I think that your doctor should do his best he can for your situation, not just give you the average care expected, or the best he feels like giving you, you should get the best care available in your area. I felt angry about what he did in your situation. I would feel angry too.

Please stay here. I appreciate your posts and your complaints too.:D

For everyone, I think the variety of our experiences and personalities makes for a great discussion. Everyone is different and everyone, whether we have mild MG or severe MG, should post on what they are experiencing. Please continue to post.

Hey Cowgirl,

I just wanted to let you know that I relate to your angst re. this situation. I go to most of my treatments alone too, and sometimes, I feel sorta embarassed about it because I wonder what the nursing staff is thinking, not to mention the fact that the treatments are dangerous. I remember reading one of your posts re. a bad reaction to PLEX- I had the same thing happen to me a few times, twice after I had left the hospital and was waiting for the bus. I ended up racing back to the hospital to get tums because my right hand was going numb as well as my lips. The last time, after I got the tums and 'recovered' to whatever degree I could, I left the hospital, went to a park nearby downtown, and balled. Everything had come to a head. I felt like my life was over, I have this illness where I can't communicate anymore, I can't 'hide' it anymore from others and 'cope' with the degeneration to whatever degree I can without it affecting others' view of me, I'm on all these medications that don't seem to help much, and I'm alone.

Anyway, it's hard having a rare illness that affects us so profoundly, and not having a lot of support or others to relate to. You have found this site, though, so you have all of us, and we are all here for you.

I understand how you feel about your doc.. You're dealing with such a difficult illness and then you have to deal with administrative issues that aren't your problem at all. I've had this happen to me too several times. I even offered to do the administrative stuff myself once, just because it seemed so rediculous and I wanted to make sure it got done. My family doctor's office is terrible, I'm not going to sugar-coat it. They lose everything, and they don't fax or make calls that they're supposed to. Before I had my surgery, I asked them a month in advance to fax info. re. my MVP to my surgeon because he had requested it. Remembering issues that had occurred in the past, I as corgially (sp.? lol) as possible asked my doc's secratary to fax it to them-like three times. I asked in all different manners I could think of without being rude, but trying to drive the point home that it was really important and giving her all the numbers and names, everything she needed. She was like, "Yes, Nicole, I understand," Sorta flippantly. Anyway, she never did it. LOL:mad: The day before my surgery, the head nurse at the hospital had to call them and get them to fax it. She got mad at her (I was sorta secretly happy about that...lol). Anyway, it's a serious pain in the buttocks, and strangling, not slapping, came to mind, sorta like you see in old cartoons.

Sometimes when I read about other members' experiences here, I definately feel very fortunate that I have the tests to 'legitimize' my illness- even the tumour I had, can you believe it?! It's sick in a way, but I do empathize and understand how they are feeling, although it shouldn't make any of us feel lucky or unlucky because we are all still dealing with the same disease, it's just a different social dynamic with the docs., and yes, a difference between treatment and no treatment which is a very big deal. I was panic-stricken when i first started to experience my speech issues- I had already learned about MG and figured the cause of my problems were either that or ALS. I was petrified that my blood tests would be negative, because I knew that I'd run into all sorts of problems with diagnosis if that were the case, that there was a good chance I might not even be believed (for years prior to this, I've had joint pain and fatigue and all sorts of other issues that were blamed on depression/anxiety, even though I have Lupus antibodies too). I actually prayed that the blood test would be positive, so I at least wouldn't have to deal with being accused of being a hypochondriac or something- not being able to talk anymore plus that would be the straw that breaks the camel's back. The point is, though, that the treatment you're getting and I'm getting (minus the administrative problems lol) should be the treatment we're all getting. It shouldn't be considered 'luck' or 'good fortune' that we're being treated- it should be 'standard.' Not using common sense (speaking about the docs. some ladies here have to deal with) should be a gross exception, not the rule.

Anyway, sorry about the long post (I've been on a long-post rampage lately lol). You can vent whenever you want- that's what the site's for. :hug:

Nicky

Desertflower: Wow, that's terrible that they can't get that billing situation worked out! I can totally see how you would feel very stressed out by that. Financial stuff is stressful anyway without them continually making mistakes! I've had that happen only a few times and it totally freaked me out--I can only imagine what it's like when it keeps happening. Maybe there's someone higher up in the billing office that you could talk to . . . Anyway, I do hope they get that straigtened out for you immediately.

Thanks for your kind words about other things as well. I do appreciate your support! :) It all really does help.

NickNerd: No problem with the long posts. If you look around you can see I'm very guilty of the same thing! I'm very sorry to hear that you have had some of the same issues with treatment and docs that I have had. I have certainly spent my fair share of time crying about what I used to be that I'll probably never be again. And I've also sometimes felt embarrassed about going to all of these things by myself and having nurses, etc. look at me like I'm pathetic. I don't feel like I am. It's just the circumstances of my life right now. But I hate the thought that others may see me that way. And I can totally relate to what you said about the wanting the tests to be positive. I wish for the same thing! Not because I want to have the disease obviously, but so I can have some kind of irrefutable proof of what I have. I live in terror that the insurance company will start denying my claims because I don't have that kind of proof. And I'm not sure how to explain it but not having the positive test also makes me feel somehow even more like an outsider, like I don't even have the right to claim support or treatment for what I have because I can't prove I have it through bloodwork. Yeah, I can't breathe or swallow or talk or walk or lift things sometimes, but where's the freaking little microscopic bug thingie!? :) It's all so crazy sometimes . . . . And I do agree that the treatment we get should be standard. And I am truly grateful for what I have and that there is enough evidence of this disease (and again, I do understand what you said about even being grateful for the tumor because it provided some proof because I feel the same way) that I get treatment. And I'm also very grateful for my insurance company that has so far paid for everything, and for all of the people in my life who do help me when they can, and for this site and for a whole host of other things. God knows it's really bad sometimes, but it could be so much worse.

Thanks for your support as well NickNerd. I really can relate to so much of what you wrote.

I hope both of you have a great New Year and that it brings you better health.

thank you
 

Dear MK,

I wanted to thank you for making me understand how wrong I was.

you are perfectly right, there is no reason for MG patients to be greatful just for the fact that someone is ready to believe them and give them very basic medical care, that every patient deserves.

I keep on saying that we should fight against this, and make them understand that even if we have a very debilitating/life threatening illness, we are still the same people that we were before. we do not want to be treated with pity, but with empathy and respect. we want to recieve answers to our concerns and not the concerns they think we should have.

but, although in my personal life, I have and am doing that, I don't dare do it with my physicians. I only "give them a piece of my mind" after I realize that either way they are not going to do much for me anymore.

even though I have come on holidays to the hospital so that my patients could recieve treatment with as little disruption to their life and work, and have done everything within my abilities to help them lead a normal life as possible, realizing how important that is for their feeling of self esteem and possibly even their recovery.

I would not dare argue with my neuro about where I will recieve my treatment. I am ready for him to see me every three month, even though I see much less ill patients much more often. 6 months ago he suggested that I will start taking mestinon time span at night and promised to send me the perscription, which requires special approvals from the managment of his hospital. on my follow-up appt. I gently reminded him of that, and he promised that he is going to do it right away. 2 months have passed and I don't even dare remind him again.

the fact that I keep on having recurent life threatening episodes that require emergent respiratory support, that I have to have my respirator with me at all times, that I can't drive, and need assistance in the very basic actitvities of life, that I am using our savings to pay for all this, and that possibly some better treatment could change this, and why wait, is something I don't even dare to talk about.

but, compared to my previous neuros he is amazing, instead of questioning me, my coping abilities and clinical skills, he treats me with a lot of respect and keeps on telling me that he is learing from me and with me, about this illness. so I am ready to accept this without any complaint. and let him learn, as long as it takes him, seeing me once every three month. he mentioned rituximab, but suggested that we wait and see, so we are waiting and seeing.

the standard of care I require from myself as a physician is 10 times higher than what I am expecting from my own physicians. I just learned to accept that. after 4 years of recieving medical care that would fit the middle ages and not the 21st century, I guess that without even noticing it, my expectations have really changed. and although if I had a patient with such a complex illness that I felt I should better understand, I would probably see him/her on an almost daily basis, consult colleagues, read, and think about it, and feel responsible for every aspect of his care, even if it is not in the exact realm of my expertise, I find it perfectly reasonable that my neuro is not doing anything that even resembles that.

it's as if I live in 2 seperate worlds-that of my own clinical practice, where patients are treated with a lot of respect, and their needs are met in a timely manner. and that of my illness, where patients should be greatful for recieving minimal medical care, and treated with anything that remotely resembles human respect.

and you are perfectly right. this doesn't make any damn sense.

alice

Thank you Alice. I'm sorry that you're struggling to get what you need. I have struggled as well. My MD sees me only every three months as well, and has tried to make it longer than that but I have told him that I don't feel comfortable waiting longer and want to continue to see him every three months. And as I said, I've been switched to a new doctor more than once without even being asked what I want to do and once without even giving me any warning. I'm always polite about it, but really do try to not take no for an answer when it's important. I, like many people here, have had to fight to get care, get questions answered, get phone calls returned, get prescriptions called in, get treatment scheduled, etc. Believe me, I have a lot of anxiety about fighting my neuro about where I'm going to have this treatment, but I feel I don't really have a choice. I just don't have the option of having someone else take me and pick me up from a clinic that is that far away from my home every week for at least a month, and I'm genuinely afraid of getting sick from the treatment and then having to spend an hour stuck on the freeway trying to get home. I really hope that my neuro won't be so angry with me because I'm causing trouble for him that he'll retaliate in some way. And no, it doesn't make any damn sense. Sometimes you just have to fight because there isn't any other way. And that's the way it is for me right now. And maybe Alice, that's the way it's getting to be for you as well . . . .I wish you all the best in getting what you need. I really do. And I really AM grateful for what I have and for the fact that my insurance pays for my treatment, and I live in a big city where treatment is available, etc., as I said before. I appreciate those things and don't take them for granted at all--I know not everyone has those things. But my being grateful doesn't mean I don't also feel frustration and pain and especially fear when things don't work they way they should. And my gratitude also doesn't mean I have no right to ask for what I need when I'm not getting it. The two feelings do coexist and they don't cancel each other out. And it's the same for you. You can be grateful for what you have and also be mad at what you don't get!

Thanks for your post Alice. I appreciate hearing your thoughts.

Alice wrote:


but, although in my personal life, I have and am doing that, I don't dare do it with my physicians. I only "give them a piece of my mind" after I realize that either way they are not going to do much for me anymore.

Reading this feels so dark and scary because I feel like I live the same way. I don't dare give them a "piece of my mind" even after I'm sure they won't give me any help. Because I don't know what the repercussions of that would be with other doctors I may need help from. I want to make sure that I someday find a doctor who can diagnose me and treat me and get to know me first before I start making complaints because I'm so desperate for help and so little is offered that I feel like i can't risk it.

I had a doctor who removed a kidney stone from me at a time when I was very, very sick and frantically looking for answers. Of course I'd hoped it was the kidney stone but that was completely just hope, it wouldn't have made any sense. Anyway, after the surgery my stomach bloated out to where I looked at least 9 months pregnant only more rounded on the sides if that makes sense. I called and called and called and couldn't get a response from this doctor. My good friend finally said, this is serious you need to just show up and make him see how horrible this is. So I did. He told me well you are probably faking that you have fibromyalgia to get pain medication and narcotics will often bloat a person up like that. I was stunned. Horrified. I never dreamed I would be treated so badly. I had been *fighting* the label of fibromyalgia for months because I realized that while obviously untrue in my case it had also become a label in my region for kooky nut who pretends she's sick. And by the way I have never, ever, ever had a prescription for pain meds except for the tylenol codeine they sent me home with after the birth of my children.

I still haven't filed a complaint against him! I was at that point feeling so cringing around these doctors like some poor scullery maid. Don't get me wrong, I was angry as hell, I just didn't dare complain until I had gotten help and treatment elsewhere (which I still haveh't obtained). I was never that way! I was always firm and professional and respected. I'd not ever been treated with disrespect until I set off to find out what was wrong with my health and then I had so many shocking encounters that I guess I had a hard time finding some equilibrium from which to relate to these doctors who sneered, dismissed, waved the referral marked "fibromyalgia" in front of me. If you're a normal, well educated, well spoken person you just can't see that coming and you're going to be ill prepared for handling it. I went through an "is it me?" stage where you wonder why, for the first time in your life, you seem to impress people strongly with the idea that you're nuts or a liar! And I felt that to get even the smallest nugget of interest in my case, the smallest effort to run tests or think about my symptoms was very rare indeed. You know what I felt like? I felt like the pigeon who has food pellets randomly dropped into his feeding tube and begins to stand sideways, with one eye closed and the opposite leg in the air believing that that will bring on the pellet. I went from being a very self confident, intelligent, well spoken person to wondering, what if I present myself this way, will it work, will that make this doctor want to help me? It's just all ridiculous of course. But I was physically very weak, very scared, very vulnerable. It's hard to think straight and be your usual tough cookie self at those times.

Why are we so afraid of pissing these doctors off? For just asking for basic medical treatment? I guess we've all been blown off so many, many times that if we do find someone who will help us even just a bit we're afraid to look crazy, be too demanding, too knowledgeable. Is part of it because we're women? Yup. I think so. Going to a doctor is like being thrown back in time when women were considered hysterical and definitely inferior in intelligence. And by the way, don't ever tell a neuro you have an advanced degree in math. It won't go well after that, trust me.

And Alice, I live in two worlds too. One world is the world of the you-don't-seem-so-bad medical world. The other is the real, real world that most people inhabit who look at you like you're crazy when you say I still don't have a neurologist, the last one told me I'm okay - and all this while the right side of my face is melting and grimmacing and overall giving off the horrifying sight of a halloween mask. Suddently they think you're crazy because of course a person looking like that would get immediate and very serious help!

And you are both right: none of this makes any damn sense.

The number of replies this post has garnered in such a short time is a sad statement on the poor "care" many of us receive from doctors. :Bang-Head: Neuros, especially, seem to be notorious jerks. :mad:

I soooooooooo understand your desire to smack your neuro. However, among other things, you probably would end up in jail. If I had any strength, I'd still smack mine as prisoners seem to get faster access to healthcare in the province where I live. Unfortunately, my weak arms have forced me to settle for a vodoo doll. One guess where I'm sticking the pins...:icon_evil:

If I may make a practical suggestion, befriend your doctor's secretary. Give her chocolates at Christmas, flowers, vegetables from your garden, whatever... It's the secretary who schedules treatments etc..., and if she knows your situation, she may steer the doctor in the right direction. Chances are he's an SOB to work for and she doesn't like him anymore than you do.

Cheers

I like my neur
 

Guess I'm one of the lucky ones. I like my neuro and he was the first one I went to in July 09. I first presented with only ocular but tested positive for ACR antibody so he started me on Mestinon and Prednisone immediately. During my recent "mild" crisis he hospitalized me which turned into an 11 day stay including surgery for my thymectomy. He visited me every day except for 2 Sundays and those days someone else from his practice came. I worry that since he's 66 years old that he may retire within the next few years. He's very fit and has more energy than me, but it's a concern. Now I do have an issue with one of his assistants :(, but I'm nice to her since she's a "gatekeeper" to him.

Had to weigh in on this topic ...

About 1 year before my dx, I had fairly significant fibrotic swelling in my legs and hands. My GP sent me to a cardiologist for a PDA/PVD test. While the tech did all the tests, the Dr. spent about 15 minutes before (and after) just talking to me.

He asked what started all this - - and I explained that my arms would get fatigued with work. The more I used 'em, the worse it got. And I had the feeling of a lactic acid overload in my legs - unwarranted for the amount of walking I had done. To me, the swelling was a detail - it wasn't the problem.

The tests were all normal and he sat me down and said he did not feel there was anything cardiac or vascualar to be concerned with at all......however, he did think I had something called MG!! He expalined it a bit, told me it's difficult to dx it and gave me a referral (who unfortunately wasn't in my health plan).

It took 1 year, 1 rheumy, 1 ortho, and 2 neuros -- but once the dx was achieved, I did something I have NEVER done before. I handwrote a thank you note to the cardio. Told him he was the the first, he was 'right', and - if I ever needed a cardio - he would be my very first choice.

My point? Absolutely, be appropriately critical of your docs. And do your best to find the doc with the right chemistry for you. But it would also be nice if we thought to acknowledge the good ones - and let them know how grateful for their expertise and care.

I'm hoping I never have to see that cardio - - but I'll bet he'll take me on as a patient if I do!!

Sue

(PS. after 6 months of Mestinon, all the fibrotic swelling is gone - just as my neuro predicted. Theory is that muscles that don't work well have a hard time supporting the lymph system in 'active' folks. So the lymph can pool and cause fibrosis.)

I have recieved many notes like the one you describe. and have had many patients stop me in the corridor and say- you have saved my life, you were my angel in white, I will never forget what you have done for me. I guess this is one of the reasons that my hospital is ready for me to work, despite my significant limitations.

my MG was diagnosed 5 years ago, by an endocrinologist, after 10 minutes of hearing my story and examining me, and telling me that the mildly abnormal thyroid tests that I had, were not responsible for any of my symtpoms. and it took an amazing number of physicians, hospitalizations, tests and therapuetic trials, and a very significant deterioration in my condition, going from someone who was able to work full time, including night duties, and only had some mild occular symptoms, weight loss, and respiratory difficulties on exertion to being almost totally wheel chair bound, requiring assitance in almost every activity of daily living and intermitent respiratory support, until it was finally verified.

it is true that I have a very unusual variant of this illness, but so what. I have seen many patients with unusual variants. patients aren't supposed to read the text book before they come to their physicians for help.

my current neuro is amazing, and possibly if I have reached him before things may have been very different. I was so greatful that he was ready to be my partner in this, and try to correct the mistakes of others. was ready to think about my illness, even after it preplexed the best world leading experts. I know that not many physicians would have been ready to do that.

well, like MK said, there are a lot of mixed feelings.

Thanks everyone
 

I just want to thank everyone, especially Alice, who has participated in the dicussion on this thread. I had no idea when I posted about my frustrations with my neuro that there would be so many reactions and so many heartfelt and honest comments. I am humbled by your support and your experiences and your willingness to share them with me and each other. And I have learned things from all of your experiences. This is truly a wonderful site and I'm so grateful and happy to have found it. I sincerely hope that in this new year each and every one of you can get the kind of care you need and deserve to get, and that you will all have (or find) docs who listen to you, value you, treat you with kindness and respect, and give you the care and treatment you want and need. You all deserve the best, so please don't give up on doing what you can to get it! I wish you all better health and the fulfillment of your deepest desires in 2010.

Thanks so much again. I feel blessed to have been a part of this conversation.

MK

MK'

no doubt that you have opened a pandora box, but it seems that you have also let hope come out of it.

hope that it is also so for you,

take care,

alice