Keri,

You are clearly a very bright lady, but you are also experiencing very classic examples of fear and grief, as well as cognitive dysfunction. This is very typical while we are in an attack, and also while we are coming to grips with this dx.

You said:

“I dunno all that he said - I was totally out of my body. I remember asking a few questions about prognosis, treatment, and to what was the most important question: can i still have children. Other than that - I can't tell you much more other than he told me it was aggressive and we needed to act fast.”

“I think the shock of it all is wearing off - and I'm beginning to freak out.”

“My brain shuts down and I can't function anymore.”

“i keep saying that if my disability was more physical I'd be okay - but it's very cognitive and brain centered right now”

“I will be on the phone and on hold with someone - and I'll forget who I'm on the phone with.”

“Im alone. I have no family. Im young.”

Your neuro has scared the wits out of you, and I am very disappointed in him for doing that. Only a few weeks into this situation, and he has told you the disease is “aggressive”, you need to “act fast”, that HE “can’t LIE to get you on Tysabri quicker (but YOU can!)", and that you NEED to start Tysabri. What a biased jerk!

At this point in the game, there is NO WAY that your neuro could even know the category of your MS, let alone your prognosis.

If you stay on these forums long enough, you hear over and over again that it is not important how many lesions you have, but WHERE they are located. When I had my first attack, I was paralyzed from get-go, had no bladder or bowel control, electric shocks, burning, breathing problems, headaches, pain, brainfog, etc. . . . all from ONE tiny little lesion. That was 17 yrs ago, and I still only have 4 – 5 lesions. They are BAD ones . . . but the number is clearly irrelevant . . . and I am still walking and doing relatively well.

Another thing you will learn is that every neurologist has their own biases. You said you are relying on your neuro’s “experience, and that of his practice” . . . but Keri, if you had happened to walk into another neuro office in your city, chances are that most would not even have CONSIDERED Tysabri as an option for you. Many neuro’s still won’t even rx it to the most hard-core cases, let alone someone who is just starting out.

On one hand, some will tell you this decision is yours, in conjunction with your neuro. This point happens work out conveniently for endorsing your current stated opinion . . . HOWEVER, those same people will tell others to “seek another neuro who WILL rx Tysabri” if their particular specialist isn’t on-board. So really, who’s decision is this and which neuro’s opinion is more valid?

At the end of the day, this is our bodies, our life, and our decision. We can not rely on ONE terribly biased “expert opinion”, combined with 5.5 weeks of terror in order to make a rational decision. Trust me, I know this first-hand . . . and I am a smart lady too.

TIME is what you need to come to terms with what is happening to you. You owe that to yourself.

Cherie