Your thoughts...

[echo]

I was diagnosed when I was 17 (I'm 26 at the moment). Since then I have been on Avonex, Rebif, Betaseron, and Tecfidera. 4 years ago I had an MRI. I had 6 or 7 lesions. 2 years after that I had another MRI. At the time though I decided to self medicate and try and run from my health issues so I never went and got the results. 6 months ago I got the results...this time its 70+ lesions (not all active). Because of Avonex, Rebif, and Betaseron not cooperating he tested me for JC Virus and it came up positive so he started me on Tecfidera instead. The first 6 months of Tecfidera are up now I had an MRI and I have more active lesions then I did 6 months ago (I think he said 7). He is going to put me on Tysabri for a year then back on to other medications. He said there haven't been or its extremely rare to get PML under a year of treatment. Physically if you looked at me people can't tell I have MS. My main symptoms are eye sight issues, pain in my eyes, balance, and I'm starting to have cognitive issues. I have been scared of this drug as long as I can remember so part of me wants to say no to it even though its my last resort.

What are your thoughts? Am I just being a paranoid little baby?

[hunterd]

i would hardly call it "being a baby". the side effects are severe and need careful consideration.with that many lesions, i would want to know how often fut5ure MRIs will be performed and if and when steroids would be an option.

[sunshine008]

You are young also, so I'd do all I could to shut the MS down for now, since its' still very active. You should also ask your neuro if you can incooperate LDN (low dose naltroxene) to whatever drug you will be using. Look it up, it kept me healthy for years... also make some diet changes, no milk, no white breads.. i think there is a place in here that gives info about that as well. Also start taking tumeric, it's natural and is also a cheap thing to add in. Look into yoga as well.

Sorry your so young, yet what i try to always remember is our brains are bigger than we think, we only use a small percentage..with that being said hopefully alot more ability to keep on connecting through those lesions.

hang in there keep us posted on what you decide to do

[echo]

I THINK I would be getting MRIs every 6 months. I asked my neurologist about steroids yesterday and he said it's not a good option at the moment since my symptoms aren't TERRIBLE. I have gone on steroids 3 times now I think.

Taking milk and white bread out of my diet shouldn't be too hard. I need to stop drinking so much Coca-Cola which I drink like water. I've looked into Naltrexone a little bit. Running away from my health issues was a nice way of saying I racked up a good drug habit. Naltrexone is an opiate (which is what I was using) although it's a really really weak one. I've been clean for over 2 years now but still doctors are a little hesitant to prescribe me opiates. I will talk to him though and see what he thinks. Tumeric on the other hand I know absolutely nothing about. So I will have to look into that.

I was diagnosed close to 10 years ago and I have yet to find a medication that I can either stay on without being miserable or one that works.

Thanks for the responses.

[echo]

I was thinking Naltrexone was something else. So maybe he would. We will see.

[sunshine008]

Here is a link to the naltroxene info...www.lowdosenaltrexone.org and your dr should know more.

Clean two years is a a accomplishment, dont' loose sight of that while you work on this.

Soda's not a good thing for us with MS, I am a big diet coke person just pulled it a few days ago, all water now. Just think of it this way "eat clean" as clean as you can till you stop progressing.. you tube has alot of good videos on how to do it.

Steriods are not a good time, I've been on them also, you gain weight, it's not good for your bones. Yet if your in a severe relapse they do the trick well.

Just look at all your options, i've come to learn drs are great, yet you gotta be your own advocate also to an extent. Did the dr's say the drug stuff might of helped your ms along also? So, now maybe being clean for two years your brain will naturally calm down too along with some decent meds and diet changes.

good luck

[ru4cats]

Boy, echo, if I were in your position and knowing what I know after 58 infusions, I wouldn't hesitate to go on Tysabri for at least a year. It is your best option to stop the further progression of your MS. Did you find out your index level? If it is relatively low, your risk of PML is much less.

Even a year on Ty would, hopefully, give you some breathing room and possibly give your body some time to heal. Dr. Vollmer from the RMMSC has a great youtube video on maximizing brain health that I strongly recommend you watch.

There are lots of new drugs in the pipeline, including Lemtrada that was just approved. Your goal should be to slow your MS as you wait for the new drugs reach the market.

Good luck!

[echo]

I've known for awhile that I need to stop drinking soda but its a hard one to stop. I just quit smoking 50 days ago so I guess one thing at a time I'd rather not go on steroids. First time was my first major relapse I was really young and it freaked me out. Second I could barely see. Third I had vertigo so bad that I couldn't eat or barely walk by myself. After a week and a half of a couple hospital trips to get hydrated I decided it would be better off to do the steroids then. Now though nothing is that extreme (yet). The cognitive issues get really frustrating though. Actually had a dream last night that I was forgetting whole conversations and what I was doing...so...that was fun. haha

I think I have decided I will trust my doctor which is rare for me to do but this doctor seems to be the best I've had.

What his goal is is to stop the progression ASAP as much as possible then get me on some other medication. He thinks the other meds just couldn't keep up with the progression. Hopefully that all works out like he is expecting. I am still going to be nervous about Tysabri especially when I tested positive for JC Virus. I heard horror stories about it right from the beginning so it has always been bad in my mind. I have read recently all the great things that come from it which has helped me change my mind about it.

He didn't tell me the index level. At the time I didn't know of such a thing but he said it was very high or active I don't remember his exact words. I thought it was either you did or didn't have it I didn't know there were different levels.

[KatieAgain]

Stopping the smoking is much more important than the soda. Congrats on that.

As far as the TY...there is indeed a point in your journey where MS is more scary than PML. You might not have reached that mile marker yet.

Did you know Chemo can cause PML. If you got a cancer diagnosis tomorrow would you do Chemo. You probably would. Why? Because having Cancer is really scary.

When I started TY...I decided to leave all my worry at my Neuro's office. He does the worrying for both of us.

[echo]

I am trying to do that. But like a lot of people I am finding out I was giving me the run around about having MS when I was first diagnosed. That gave me a negative outlook on doctors.

This doctor was not involved what so ever in all of that mess so I need to drop that resentment and trust him.

[echo]

I go in on Thursday for my first infusion

[DexterMorgan]

I was just about to respond when you just reacted you are going to have your first infusion haha!

Just wanted to say that I'm 23 and I can tell you I have the same opinion about the doctors. I think for some odd reason perhaps MS neurologists don't know how to deal with younger MS patients. Mine was quite something with dealing my permit license, Erasmus and sickness letters when I couldn't go to school. And it still is sigh.

BUT! I'm glad you decided to do Tysabri, thought it was weird that your neuro let you do Tecfidera first when Tysabri is the best out there. I'm having Tysabri since I'm 18 and I have to say that I didn't notice much of a difference but after I'd say 2 years when my MS got worse I definitely noticed that I was much better when I got my infusion. So good luck to you! I hope you'll love it and that it will help calm the lesions!

[echo]

When I was first diagnosed when I was 17 the neuro thought the risk wasnt worth it. Or maybe I did. I don't remember. So they started me on Rebif.

[DexterMorgan]

When you are 17 you can't really get Tysabri as the minimum age is 18, plus Tysabri is something you can only get after you've tried the first line treatments. If those don't do anything then you can have Tysabri.

So he did the right thing to put you on Rebif first. Mine put me on Avonex for 6 months, was the best as I wouldn't have to inject myself so often because of school. But it didn't do a damn thing lol. So after those 6 months, Tysabri right away!

But anyway good luck!

[lindaincolorado]

I would find out what my titer # is, still going for Tysabri for a year. Then get another jcv test and see what that titer #is and then decide along with your dr if you want to stay on Ty.
Retuxmab and Lemtrada are also big guns.

I started Tysabri 10/2006 and am VERY grateful to G-d and Tysabri