Looking for answers to hard questions,

[Greysmom]

My best friend my sister was diagnosed at 23.. She's 30 and the decent from an average girl who stumbled every now and again to the wheel chair bound, the state she's in now...bowl control and bladder infections and temporary loss of site at times, scatter brained, daily injections that aren't doing enough, stays in the hospital to do intense steroid therapy that used to put her back on her feet and now they can't keep doing them not at the rate she would need and its not working the same.

Ive been told life expectancy is pretty similar to anyone else. Ive researched and researched made myself nuts and her progression i mean this thing has just taken her.

all the research says most people and "unless its severe" ... She told me it wasn't severe... Thats not true is it? I just wanna know know the truth. It is severe? this is the rare instance right? someone tell me the truth please.

[fourtimer]

nobody can really answer that question but her doctor! I'll put in my two cents for whatever that's worth… It does not sound severe to me. I've heard worse case scenarios.

This is also new to you of course are researching everything, but that can make you crazy! Just listen to what she tells you she is your best source. Sometimes the symptoms come on fast and heavy while other times it's a slow progression. Neither is worst than the other, we are all different!

I will keep her in my prayers as well as you and it's easy to say but just try to remain calm for her. She will need your support and possibly a shoulder to cry on, so please try to stay strong!

[jreagan70]

This isn't pretty, but being wheelchair bound at age 30 is severe.

And I have to agree with you that the medication that's administered in daily shots isn't doing enough. It's one of the MS treatment medicines that has the lowest effectiveness. Someone who has progressed to being in a wheelchair after only 7 years should be on one of the medicines with a track record of better effectiveness.

The idea behind treatment of auto-immune diseases like MS is to be on a medication that works to prevent relapses and progression rather than trying to catch up from behind by treating the relapses with steroids. That's not always possible, but your sister beinig on the daily shots with low effectiveness is evidence that not enough may be happening on the prevention side of the equation.

There very well may be a whole history of medications your sister has tried that can explain why she's on that medicine, but you'll have to answer that question for sure to know what else might be possible.

If you have any communication with your sister's neurologist, it will be worthwhile having a conversation about her MS treatment medication. The most effective medication for MS, with the longest track record, is Tysabri. Another medication called Lemtrada was recently approved in the United States.

The way you've described your sister's condition, it is severe for age 30. But it may not be too late to slow down the progression. If you can talk with your sister's doctor, you'll get a better idea of what's possible. I wish you and your sister all the best.

[fourtimer]

I'm really lousy at researching this website so I have a question for you jregan70 and
I was looking over your past posts and could not find any started by you.

Do you have M. S.?, Or do you have a family member or friend with the disease?you really seem well read on the subject and I was curious to learn more about you. That is if you would like to share.

I will be looking forward to your reply. Anyway, welcome on board!

[22cyclist]

Most people on here have MS with the exception of the limbo lander board. I agree with what people have already said. Frankly I am surprised her neurologist has not moved her off of the CRAB drugs (shots) around 30% efficacy for preventing new lesions and relapses, and gone with the pills around a 50% efficacy for preventing new lesions or relapses. Tysabri is next, an infusion that you get every 28 days and it has about a 70-80% efficacy for preventing new lesions and relapses. After these, there are chemo drugs that have the same efficacy of Tysabri.

If it were me, I would get a second opinion.

Good luck and you are such a good sister for reaching out for her.

You are welcome to post on here all you want, I didn't want to give you that impression when I said that most everyone has MS.

Take care
Lisa