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Old 02-05-2009, 01:32 AM #21
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Char,

It is a shock to see it in print. It just makes it more "real." I imagine if you have never seen it in print there is a little teeny weeny part of your mind that thinks "oh maybe this really isn't MS and it will turn out to be something else down the road." Now you can't play that game in your mind anymore. That's hard to digest.
I remember when I first got diagnosed I looked at the radiologist's MRI report. The doctors were a bit uncertain for a couple of months since I had constant fevers and other weird things going on that suggested infections. But from the beginning the radiologist called it. Seeing the diagnosis in writing saying "multiple sclerosis" instead of something like "possible demyelinating disease" or just "lesions in the corpus callosum or cerebellum" was very jarring. It was screaming at me off the page.

Hope you are feeling better soon.

Natalie
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Old 02-05-2009, 06:52 AM #22
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Hi Char,

I am SO sorry that it was so hard for you reading the piece of paper with the DX "MS" on it. I DO understand though ... I know I don't have MS but I think it's the same for us all, it is always hard seeing things in black and white as it brings things into reality if you know what I mean?!

When I finally got the diagnosis of RSD, I was SO upset but was sort of relieved at the same time as the doctors finally believed that something was the matter with me!!

I'm thinking about you and we are all here for you!
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Old 02-05-2009, 10:28 AM #23
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Quote:
Originally Posted by Victor H View Post
Consider it a blessing because it could have said something worse.

I am so glad that eons ago, MS was my diagnosis and not the alternative,..., a brain tumor.

-Vic
Vic - You are so right. My alternative was a nerve tumor in my spine.


Char - I could be wrong here but I think that since you haven't been told it is definite MS that seeing the words DX MS was a little bit of a shock to you. I think I would have felt slighted if I were in your shoes. Kind of like why did my dr put that on the order but didn't tell me I had it.

We all love regardless! Hang in there and I do hope you start feeling better soon.
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Old 02-05-2009, 10:33 AM #24
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Aw lil' lambchop. I remember the first time I saw my neuro write that down for me. It struck me sort of cold. He was writing out a 'script for Provigil while I sat there.
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Old 02-05-2009, 06:07 PM #25
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i know what you're saying char. it is a shock.
when i was being worked up and all the tests were pointing in that direction i was still in shock when i heard the words "yes, you have MS".

it will take a while to kind of sink in.
in the meantime...
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Old 02-05-2009, 08:08 PM #26
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Well, I just hope the roids are helping you feel better YB! It's unsettling to see things like that written down. When my Neuro told me on my first appt w/him that I had MS and was to go to the hosp for 3 days of IVSM, I looked at him like he was from outer space.

He's changed his DX several times, but I remember seeing MS written on the order and it felt like a kick in the gut. Same thing happened when the Dr told me I had a bone disease and I'd better take it seriously. I looked at her the same way. Not me!!! It couldn't be!! Well, it still gives me a stomach ache when they tell me that I have this disease or that disease. It's a reality check and a harsh one.

You will do fine Char! But, I would ask the Neuro at your next appt to explain a few things. Sending hugs to you, my leetle YB friend.
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Old 02-06-2009, 07:10 AM #27
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Thank You, Everyone! I had to call the Neuro yesterday for during my Infusions I was having a low blood pressure. The nurses were not happy with with it so they called. The neuro called me back later in the day to check on me.

I asked him about the dx written on the paper. He said to me, "Charlotte, I am sorry that upset you and I am sure it was hard to see. You were there for the Infusion for a dx of MS, yes I feel you have MS 100%. I also have Laura (the nurse) working on finding a medication I can give you to slow this down for free since you have no insurance. This is the fifth time in less than a year you have been on some type of Steroid's - each time it fixes the problem, that is a sign of MS along with every one of your sx, I am sorry to say but you have MS. It is time to slow this down if we can and I can't wait any longer and either can you."

He then went on to appologize that he did this over the phone, he felt really bad but I told him it was ok, I am the one who asked. Plus, I need to know so I can personally deal with it. He is a wonderful Neuro - I respect him and trust him.

Thank you for your support!

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Old 02-06-2009, 08:33 AM #28
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(((Char))) Please know that we are all here to help you through this initial shock of definitely being dx. The 1st year can be kind of rough but many of us have been there and are more than willing to help you through this. 's for you.
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Old 02-06-2009, 08:34 AM #29
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Quote:
Originally Posted by yeahbut View Post
I asked him about the dx written on the paper. He said to me, "Charlotte, I am sorry that upset you and I am sure it was hard to see. You were there for the Infusion for a dx of MS, yes I feel you have MS 100%. I also have Laura (the nurse) working on finding a medication I can give you to slow this down for free since you have no insurance. This is the fifth time in less than a year you have been on some type of Steroid's - each time it fixes the problem, that is a sign of MS along with every one of your sx, I am sorry to say but you have MS. It is time to slow this down if we can and I can't wait any longer and either can you."

What a kind doctor! Trying to find a way to help you since he knows you have no insurance. I wish there were more doctors out there with that bedside manner. When I told mine I had no insurance he just sort of shrugged like "oh well, your problem not mine".
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Old 02-06-2009, 09:51 AM #30
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Char,

That neuro is a keeper, God bless him. I hope the nurse can get you fixed up with some MS meds to slow it down.
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