NeuroTalk Support Groups - Doctors reading the boards??

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- - Doctors reading the boards?? (https://www.neurotalk.org/multiple-sclerosis/42780-doctors-reading-boards.html)

I think FG may be right about how this came about, Keri. I am willing to bet that all the noise made when you were having so much trouble with MSAS and the infusion center and all the other garbage they put you through may have spilled all the way down the line from top to bottom.

When something goes wrong, as happened to you during the whole process, the higher-ups take it very seriously. I'll bet questions were asked all the way down the line and people were put on the spot and it made them unhappy.

Regardless of how it happened, your neurologist should NOT have taken it out on you. You did what you had to do to get proper medical care and advocate for yourself when everyone who was PAID to be assisting you dropped the ball over and over again.

Keri, I am completely apalled reading this. You did not do ANYTHING wrong.

I think it would have been more appropriate for your doctor to acknowledge reading your posts in order to open up a dialogue, not to scold you.

If doctors read our threads I would like to feel it's in an attempt to gain insight into the feelings, experiences, theories and questions of those with MS -- not just to scour the web to see if any of their patients are saying anything about them. :(

I agree with almost everything said here. I know it's a public forum and anyone in the world can read it. I'm fine with that....but one would think that doctors would know that this is where WE go to unload, vent, share, etc. and that it's almost "sacred" space to us.... and if he or his staff is reading it - then it should be because they're wanting to help us....not take slight at anything they read here.

I'm not feeling as lousy about the situation today....but I do think that the next time I see him that I will address it with him - how I felt bad that it was believed I did something wrong...but that wasn't the case. (Of course, he may know this already b/c I've posted it here! LOL) I don't want him believing that I think badly of him or his practice. Fact is, they have been very good to me the last three months; they return my calls, give me appts when necessary and usually right away.

And yes, his staff may be aware of stuff b/c of my recent dealings with TOUCH/Biogen, etc. I think what happened in my case was an exception to their usual dealings....but it still happened and it still need(ed) corrected.

Sadly, though, he did specifically refer to online message boards.

Oh well....c'est la vie.

Hope everyone is having a nice Friday.

~Keri

What I don't understand is, since you always hear that one of the doctors' biggest problems is being excruciatingly pressed for time (think of how many of them dash for the door before the patient is all done), how in the world do they have TIME to read these forums?

That's why I've never thought that many doctors would do it, at least not enough to run across an identifiable patient.

I suspect the case here was a real fluke.

Nancy T.

Quote:

Originally Posted by lady_express_44 (Post 250981)

Very sorry to hear, Keri. :hug:

Your neuro, if he is reading, has unfortunately caught me in a very bad mood today, so I probably need to apologize up front, but . . . .

I have no idea who your neuro is, and I doubt anyone else paid any attention what-so-ever to any hints you (may) have given about the identity of him or his practice. I think I recall you talking about mix-ups between the doctors office and TOUCH facility, but I think most of us are astute enough to realize that this is going to occur at most of our doctor's offices, occasionally. He ought to give us some credit, and definitely cut you some slack . . . obviously your main point was to unload your feelings of anger somewhere SAFE. If you can't do it here, where the he11 can you?

THESE FORUMS ARE FOR US :mad: to vent and have people in our lives that understand our pain, frustration, despair, and sometimes feelings of hopelessness. We are already so alone in this disease, even if we are surrounded by people in our lives that love us, and we need a place to go where we can say what we need to in order to carry on with life, as it is.

I was thinking about this yesterday actually, after I went to see my doctor. He is the best doctor I could hope for, with lots of MS patients (are you listening, Dr B?), but he really has no idea how awful it can be to live like this. He goes to work every day and puts up with all the complaining (I wouldn’t want his job either), but he does not have to experience what it we go through. I knew, when I walked out of his office yesterday in tears (no fault of his), that no one really gets it. Even some of the people here have no idea how gross and/or scary this CAN be for some of us.

So, Mr Neuro, if you are watching . . . you should never have said anything to Keri about reading what’s on here. We don’t care who you are, and this is not about your ego or reputation. This is OUR place to be, and your only place here is to listen and learn to have some empathy for us. Now go away, unless you are going to use this information to help us. :cool:

Cherie

Right on!!!!
U said exactly what I was thinking while reading Jan2you's post.
This subject actually has crossed my mind a few times,But I through it out,as what doctor would have the time to read the ms boards.
Like Cherie has said this is the only place that we can let all the steam out.
For ppl like me who's family wont listen,and dont care to learn anything about ms,this is the place for me to have my "poor me" days,and leave my thoughts with someone I KNOW,gets it.
:I-Agree::Good-Post:

Quote:

Originally Posted by Nancy T (Post 251881)

Red - Nancy has a good point. Additionally, had that time been spent helping you as a patient in the beginning this would never have happened to you. I am sorry this happened to you. Honestly, I know you posted about your experiences but I don't remember what you posted only what you were feeling at the time. In order for one to figure it out they would have to read ALL of your posts and put it all together. Seriously, who has that kind of time? Oh, your doctor. I'm sorry.:D

There are pros and cons of health professionals reading this. However, I like to only think of the pros. The insight in to what it is like to live with not only MS but other diseases discussed on message boards can be invaluable to health professionals. Of course the biggest con would be what happened to you.

Additionally, as others have stated, this is a public site. To share a scary experience, which whoever has that much time on there hands needs a better hobby IMO, I posted something on another message board. Within minutes someone was able to figure out where I lived (within a few miles) and what school my kids went to.:eek: They actually posted that information on the message board. Since then, I have been somewhat careful on what I post.

I am not sure if you are going to continue seeing this doctor or not but I hope the 2 of you can get past this and on to more important things like treating your MS in a more constructive manner.

Quote:

Originally Posted by Riverwild (Post 251271)

Good point Riverwild - it's the old "blame the victim" mentality, or in this case - blame the patient which we seem to be seeing more and more of over the years.

I know my neuro would never have time to bother reading these message boards and then go to the trouble of trying to figure out if someone was his patient - although it would be fairly easy for him to do for me as I do use my name and my location - I doubt I and my posts would be of any importance to him - it's what I tell would tell him anyway -

Quote:

Originally Posted by tkrik (Post 252059)

Additionally, had that time been spent helping you as a patient in the beginning this would never have happened to you.

My thinking exactly!

Although I agree that it WOULD be good for doctors to read about people's experiences and try to better understand patients' perspectives. I suspect the best doctors already do understand this pretty well, but a lot of them certainly don't!

Nancy T.

Sorry your doctor gave you grief. Shame on him!!

It is important to realize the boards can be read by anyone. Even boards that have discontinued forums! I found all the posts from the other board that I used to call home on boardreader, and was totally floored to find they still existed and could be read. I was actually delighted to be able to go back and re-read many posts I thought had been whiped out forever!

Hugs,
Carolyn:hug: