Not the best of neuro appt

[Lendi]

I try really hard to be a "glass half full' kind of person. I am for the most part but sometimes it just seems impossible.

I had an appt. with my neuro yesterday. He's suggesting I get a walker with a seat on it. He wants me to exercise by slowly walking 5 min 3X a day if I can but with the walker.

When I was first DX'd with MS he said it was probably very mild and if I didn't have narcolepsy and testing we would probably never know I even had MS. He says that both my MS and Narcolepsy are causing problems and working against me.

Now, he's saying I"m progressing. I thought, at least, I'd go to canes first.

He also said that I've tested positive for antibodies so Tysabri will probably be out at the two yr mark (feb.) But, he also said my immune sy is really high (in a neg way) and ty is the very best for me and he'll want me to go back on it 6 mo after I go off. And, that once we get to feb he may still want me to stay on Ty despite the possible problems. (I"m ok with Ty)

The worst part is this has hit DH so hard. He's already frightened of ms *thanks to well meaning friends who have told him every possible horror story* and Ty. Now, he's erally worried. I hate him being hurt because of me.

I know that I'm just reeling from the appt. now and I'll feel better with a bit of time. Thanks so much for "listening" as I know you all know what I'm dealing with.

[cosake]

Lendi -

Even if you are confident in your current neuro, it would not be inappropriate to seek out a second opinion. Your health is not something to mess around with, and neither are potentially dangerous medications.

Are you seeing an MS specialist ? It may be beneficial to make the switch if you can.

My hubby is having a difficult time with my MS diagnosis as well, and I am only 18 months into diagnosis. I had my first real flare about 6 weeks ago and it really scared him. I think it's hard for them to see something like this happening to the people they love --- and the fact that they can't do anything to make it better is awful for them.

Good luck.

[Jules A]

I hate MS!

Since it is absolutely impossible to predict the course our disease will take I don't think physicians do us any favors by candy coating the possiblities at the beginning.

I hope things settle down for you soon and that the exercising with a walker helps you keep your strength and stamina.

[Lendi]

Thank you, friends. I'm just sort of back at the beginning when i was first DX'd with MS. It just takes a bit of time, I guess, for reality to hit sometimes and then deal with it.

I've considered going to another neuro but there aren't any MS neuros anywhere near in my area. I just can't make a 4 hr drive without resting, especially there and back in one day. as it is DH has to take time off from work and drive me the 1+ hr each month.

My body has rebelled agains rebif, copaxone and betaserone and since Avonex is basically the saem as rebif that's not really in the picture, either. It seems that it's just a matter of time no matter what treatment before I start getting anti-bodies. I'm actually much more afraid of no medicine than I am the TY.

I think it's that nothing seems to be slowing the progression down that's getting to both DH and I. We had such high hope for TY but maybe it would be even worse without it.

We knew I was getting worse I guess but we just didn't want to acknowledge it. We should have known when I was able to get SSDI on the first try stating leg weakness as the reason.