Really need some encouragement.....

[kate8103]

Long story short:

Dx'd in April of 2010 after a 6 week stint where they kept telling me I had an inner ear infection. One week hospitalization and they finally figured it out.

Only other 'episode' was 4 years earlier where they told me it was inner ear--again lasted about 7 weeks.

My symptoms present themselves 'visually'...
Been on Copaxone since May 7, 2010.

Was treated a few weeks ago for a sinus infection....was noticing some visual changes...nothing major...had them dilated and nothing was wrong...no optic neuritis. Went to my neuro....all tests seemed to check out but she put me on a course of steroids and sent me for a brain MRI.

Got the results last night....my 'old' lesions have gotten 'better'.....but there was one very small new one. She was happy that she gave me the roids and said the new small lesion could have been caused from the sinus infection.

So HERE'S MY QUESTION:
does this 'new' small lesion mean that my meds are NOT working???? I don't want to have to change my meds....we are repeating an MRI in 6 months...she said if there are any new at that time, we have to change.

I am having a really hard time wrapping my head around this whole MS thing....I vowed I wouldn't let it run my life but I can't stop thinking about it.

[cosake]

I'm no expert, but there is no definitive test to see if a medication is working for MS or not. You have to wait and see if you get more lesions or symptoms, etc. If you and your doctor aren't satisfied with results, then you should change to a different med.

Sorry if that is not encouraging, but I think you may somehow need to get to the point of accepting that everything about MS is unpredictable - symptoms, lesions, treatment, etc.

I'm sure others with more knowledge than me will reply as well.

[heliotrope]

I think "not working" really depends on the definition of the neuro. Remember, the meds are supposed to slow progression, not stop it... so unfortunately, we have to expect more lesions to turn up eventually.

[ThymeHBF]

okay, this isn't an answer but your post is so familiar! I was misdiagnosed for 3 years with Meniers (an inner ear thing) and on the wrong meds! Just one MRI and they would have known it was not that!!

[Just a small town girl]

Like Heliotrope said, all neuros are different and the disease modifiers are just that modifiers. At your next appointment make sure you let your neuro know that you don't want to switch and that you want to give the copaxone more time if that's the way you still feel.

Stay strong and keep us posted.

[gretchen1]

I had one of my biggest flares 7 months after starting Copaxone. I was sure it wasn't working. When I saw my neuro, she assured me that is was. I have been doing real well ever since. It's true, there is not REAL treatment for MS. Everything out there is just attempted treatment. You will experience progression. Just think positive, eat well, take good good care of yourself and you will be able to deal with this.

Our diagnostic stories are nearly identical except my flares were separated by 7 weeks.

The first year of your diagnosis will be the worst just because of the worry. Hang in there. And remember, it's not your doctor who determines if you will switch meds, it's you. Sometimes the meds. don't really kick in until well after the first full year.

[Minster]

Everyone here has basically said all you can say.

I actually got to see my latest MRI for the first time a few months ago.

I was floored at the amount of lesions, or as my husband calls them "thumb prints" on my brain...and that's not even all of them.

Apparently there are more that don't show in the brain, they can be down your spine and in the brain stem.

Another thing, about the lesions "getting better"...this is curious to me as I was lead to believe that once that "gray matter" is dead - and by dead I mean the myelin around those nerves - there is no way to repair it....

At any rate, stay strong. I was in remission for 7 years with nothing until last spring. I started to go through the same emotional battle I went through in 1999 (when I was first dx'd) again. I just had to get on some kind of DMD and get it together. Not only for myself, but my husband and family as well.

You can do it. It'll get easier.

[kate8103]

Thank you everyone for your replies... Minster, they told me that the lesions never go away but they can get smaller....either way, I am NOT happy that there is a new one.
Have a great rest of the weekend

[Just a small town girl]

Another thing, about the lesions "getting better"...this is curious to me as I was lead to believe that once that "gray matter" is dead - and by dead I mean the myelin around those nerves - there is no way to repair it....

Interesting. I was told that myelin can be regenerated. So although sometimes a lesion isn't going to get better, one of the great things about at least some of the modifiers is that if they work, they give your body a chance to regenerate myelin which can repair or patch some of the damage that's been done. I could be wrong on this, but that was my understanding.

[Minster]

Wow guys, that's amazing!!
I was just doing some research since my reply, and it would seem that if I took time to better educate myself instead of always relying on what I think I remember...these kinds of things would not happen.

Thanks so much for the heads up ladies, I really do appreciate it!

[KoKo]

myelin

Hello

If interested, here is some info about Myelin from the National MS Society:

http://www.nationalmssociety.org/abo...lin/index.aspx

Take care,
KoKo