A while back I read ref how neuros. monitored this board. While I know the poster a bit and do trust her, I had doubts. Something must have missed understood – right? I thought you have a much education, you have many patients to see each day, you must be tired at the eod (I was when I worked - my position was a desk job but, very high up), you have families, I know you love the WSJ, stock, bonds…, so why would you ever consider monitoring a MS board? You should be looking at the trials, new drugs, new hope and deciding what is best for your patients. I pay your 300. plus bill for 4-5 min max, I expect you to know more then me. Why don’t you – you are indeed sitting on you behind at home playing your little net monitoring games. IMO, you are worth nothing as a Neuro. Or a GP.

Yesterday, you and your staff proved 100% what you do in your spare time. I came to this site and asked for prayers, I went to several friends on myspace and asked the same. No one except close net friends (2) knew exactly what was going on. But, you did!

How do I know 100% - one of your stupid employees told me I had a nice site but to expand it a bit in so and so manner. My response “ok, thank you”. Less then 30 min I was denied treatment. Since I fake info on mypage sign in the only way you could have got was here, I had a link for 2-3 days. Your ignornat employee also mentioned how prayers did not come to be. How did she know about my prayers? Only people here would and then only if they researched my posts. They did not do that. I know the members here - it is their nor my stlye.

I was better and you would have trusted me as my,main Dr did. But, your and your infusion center had to go to the boards and view my inner most feelings. This was none of your damnnnnnnnnn business. We are open domain, but you have no business here. We are friends trying to help each other and that is all. You have raped me of of my privacy and religous rights. Do I not have the right to ask my friends to pray, here or anywhere? I do !!!!! You monitor me here. No Prob You Ba******************. Do you really think I cannot contact mods here.... and have a name change, no posts following me.... U are so stupid, I can. That is 1 desion out of your control and there are many other places I can go. Just in case - thanks for the rape - yes I do know 1st hand what rape is and yours has hurt me worse then 1983..

I'm sorry you were so upset. I hope you find some peace in the situation.

Big hugs.

So what happened because of what you wrote here, Sheena? Did they refuse to treat you further with Tysabri?



Cherie

I am so sorry for the way they hurt you, Sheena.

I, too, would like to know if they stopped your Tysabri, because of what you said here...

sheena,

i'm so sorry that you've been hurt so badly.
i'm here for you to listen.
please know i'm thinking of you.

I'm very sorry that this happened to you, but this should serve as a lesson to us all. One should never post sensitive information on a public message board. These boards are open to anybody who is capable of using Google, and discretion must be used in divulging anything that you wouldn't feel comfortable with the general public (or specific members of that public) accessing.

Personally, I welcome neurologists and other health professionals viewing sites such as this. Reading MS boards would give professionals a window into the thoughts and feelings of their patients that they wouldn't otherwise be able to get.

Doctors are universally taught that patients often lie in the office setting. This isn't because patients are inherently dishonest, but because people are often intimidated by their doctors, and are uncomfortable or unwilling to discuss sensitive issues with them. They might lie about embarrassing symptoms, their ability to self medicate, or many other potentially disquieting subjects. Sites such as these might give doctors a better understanding of the true feelings and problems of the patients they treat, and thus lead to better patient care.

That said, any professional that would use information gleaned from a public message board against one of their patients should be looked at with utter disdain. We are people dealing with a chronic, debilitating illness, and as such are vulnerable enough without having those whom we entrust with our care tearing us down.

There is nothing wrong with seeking support, information, or little handholding from public message boards. But posting information that could be potentially damaging or embarrassing to the poster is pure folly. There are private, members only message boards that a much more suited to that purpose...

I think it's easy to forget that we are open to the "world" and not only the friends we have here talking back to us

But just something to keep in the back of your mind when posting specific details.

Yup, we tend to forget that this a Public forum. All are invited to read and/or comment.

Wow, sheena!! I don't know what happened, but sounds like someone used your posts against you... and in this fight of all places.

I do tend to be very open on forums. I don't say things I don't mind getting out though because you'd be amazed at what happens when you google someones name, email addy or user name.

Sorry you were hurt. Hope everything is getting back on track and you are able to recover from this!

This is exactly why when I mention my online support group to Jim's neuro doctor I say "my ms support group", nothing more. Now, if his spinal cord doctor wanted to come on I'd be all for that! He's the best thing next to sliced bread.

Sheena, I hope they didn't refuse treatment based on what you said.