Okay...not trying to make my situation any worse....but I heard from my neuro today - and he mentioned how he knew I had posted negative things about him and his office. I felt VERY badly when I got off the phone....I still feel bad - as I really like him and his staff...in fact, his assistant is wonderful.

BUT...sometimes things don't go well! I had lots of problems in the process of starting Tysabri and getting it all to work out....and yeah, I vented here. I feel like the ball was dropped several times by different people (including the Tysabri people) and I discussed it on the boards. I never mentioned his name. I did tout the fact that the practice he is part of is a BIG MS practice in my locale... I also b*tched out Blue Shield. Do I need to worry about repercussion from them?

And now I realize that I feel somewhat "violated" knowing that he or his staff are reading the boards. This is supposed to be a safe place for us to talk and vent....but how could we do that if we have to watch our words?

Anyhow...just venting some more I guess.

~Keri

Maybe we should consider changing all our screen names and not putting any geographical information in our profiles.

I just dont see most doctors going to the point of searching the forums to see if anyone's talking about them.

Very sorry to hear, Keri.

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 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.

Cherie

Thanks, Erin and Cherie.

This is supposed to be a safe place for us to vent and talk and whatnot. It is unacceptable that the doctors were reading it - or rather that he mentioned it to me. Nothing I said in any post was untruthful.

Actually, I made the worst comments about the TOUCH(tysabri) people. I accused them of picking their noses and not doing work - and in actuality - I said this to them on the phone several times, too! Of course, I ALWAYS apologize - usually after I break down and cry because of the everything (from the bureacracy to the MS) has me feeling awful.

And then...when the TOUCH people came thru for me - I sang their praises to them and the boards. Okay, so I'm bipolar and nuts. Yeah, mood swings up the wazoo over here....I go from horribly depressed to over-anxious and having anxiety attacks. Hmmm....I wonder if that has something to do with the fact that out of the blue I was dx with MS in January?!

I considered not coming here anymore...but then realized that is so NOT right....I didn't do anything wrong (so why do I feel so awful and rotten?).

~Keri

Maybe you need to also consider the fact that several phone calls and emails were sent to Biogen regarding the problems that you were having with MSActiveSource and that the problems were not isolated to just YOU but the Infusion Center and his office staff with no names given.

If I were you I wouldn't take it personal. I have it on good authority that there are problems in that particular area and that you are not an isolated case. If your doctor felt the need to call you on the carpet for the problems, then he certainly needs to take a look at the bigger picture.

He does have a good practice, that is not the issue. The system is the issue and you just happen to have got caught in the middle, which is unfortunate. Maybe what happened is a wake up call for the TOUCH protocol enrollment process. Who knows...but whatever the reason, it's too bad he put guilt on you.

i say if doctors are reading our post please take note at how easy our writing is to read, as appose to the scripts we have to take to the RX and have the pharmacist myself, and a fortune teller try and decipher, for twenty minutes.

We all need to remember, too, that this is a public board and anybody can come here and lurk and read. Anybody.

We (I) do sometimes forget that a safe place isn't necessarily a private place. Anything you put on a message is board is pretty much public information. A few times I've googled a particular phrase looking for information about MS, and lo and behold, what has popped up? A post from our very own boards!

You could post something really goofy, like "MS is caused by cranberries", google that phrase in a few weeks, and find your own quote! Cool! Or scary...

Actually, I've seen many posts from people WISHING that their docs would read the boards and see exactly where their patients are coming from. Sounds like there must be a balance somewhere.

Very well said, Cherie.

Keri, I'm sorrry you feel violated but you are not wrong your doctor is. Do not let him run you off from here.

If he is reading this forum and can't handle what is said that's his problem not yours. It appears he may have an ego issue and my personal opinion on doctors - they are not god and they do not know everything.

Empathy, compassion and understanding - something that can be hard to find in some doctors.

Guess what? I just googled "MS caused by cranberries" and about the fourth thing down was what I just said two posts ago...wow.