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Old 05-23-2007, 01:55 PM   #1
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Sort of good news....

I posted a couple of weeks ago and have been lurking since then. Didn't have much to add, as i'm new to all of this!

Anyway, just wanted to share that I met with a neurologist today and had a good visit. She reviewed my symptoms and the reports for my 2 (c-spine & brain) MRI's. she said that the good news is that i've only had one "episode' (lost feeling on most of the left side of my body for a few weeks, after severe muscle spasms started in my neck) and only 1 real lesion is showing on my brain. Based on that she won't DX me with MS. She's going to do the evoked potential tests (all 3) and we'll go from there. BUT - she said that despite how they come up, the chances of me having another episode in the next 6-12 months is pretty low. I'm still having some residual symptoms (tingling fingers, numb left ear, some fuzzy vision, a little off-balance), but nothing major or unbearable. She said if at least 2 of the 3 EvP tests come up abnormal we'd talk about a DX and/or medications, but otherwise we'll wait 6 months and do another MRI.

so....for now, good news. or at least no news is good news. i'm feeling much more at ease with everything now. After hanging around this board, i've definitely realized that even if it IS MS, it's not the end of the world. It's livable, treatable, and doesn't have to change my life....at least not in the near future.

thanks for listening!!!! feels good to get that out to some folks

erin

 
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Old 05-23-2007, 02:06 PM   #2
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Re: Sort of good news....

Erin,

You have a very positive attitude and thats inspirational.

You're neuro is heading in the right direction with the additional testing.

MS is livable most days,it has its limations but we all learn to work around them.

When are your EP?Please keep us informed and jump in and reply to post we love hearing from you.

Keep your positive attitude and remember if you are feeling a relapse,call your neuro,try not to wait it out.

 
Old 05-23-2007, 02:40 PM   #3
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Re: Sort of good news....

congrats! That is good news. Im not entirely sure why she is so positive that you wont have another relapse in the next few months, but if she is right- hurray! Legions can form at any time, and usually dont give any notice, but on the upside, you dont have enough to meet the dx criteria known as the McDonald Criteria, which is why she is hesitant to dx you. Thats really good. Only having one legion is practically unheard of- so keep it up!
Keep us posted on the EP tests..
N

 
Old 05-23-2007, 02:54 PM   #4
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Re: Sort of good news....

thanks, girls, for the positive words! i'm definitely trying to keep a positive attitude. As my husband keeps telling me, things just work out for us.

i don't know that she's 100% sure on the chances of a relapse in the next year or so, but she just said based on the history so far it's not as likely. i'm hoping she's right.

i have the EP tests on June 4th.

erin

 
Old 05-23-2007, 03:57 PM   #5
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Re: Sort of good news....

It's great to hear some positive out there! I agree, you have a great attitude about the situation. Lesions are never good, but only having one is a good sign. I don't know what the average is, but at least you don't meet the basic criteria for a dx. As far as another relapse, for now just enjoy getting better and don't worry about that! If it happens it will happen, and you can deal with it then. As far as how likely you are to relapse if you have MS... from my understanding MS usually goes in an upward curve, with your first few years of dx being more "remitting" and later years being more "relapsing". Not that it garentees anything, and every person is very different, but from what i've read most people go a full 8 to 14 months before a second relapse. My second relapse was about a year after my first and dx. Anyway, keep the positive attitude - whatever happens it will work out in the end.

 
Old 05-23-2007, 05:49 PM   #6
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Re: Sort of good news....

Erin-
I do hope that you go relapse free for as long as possible! We all wish that for you. Unfortunatley, I cant agree with Shelley on this one. I had 4 relpases in my first 7 months, however I started Rebif and had 3 relapses while in the first 3 months of starting the drug- I actually started Rebif only 3 weeks after my first relapse, and first symtoms started showing. I was given a dx REALLY fast. But then, I have over 50 legions in my brain..

The good news is, its now been almost 6 months of being relapse free, 9 months on Rebif..and the very best news was that on my latest MRI, nothing was enhanced, nothing new was showing, which means the Rebif is working for me.
Promise me, at the very first sign of anything being wrong, you will go back to the Neuro and get on disease modifying drugs....they so much work, and help to keep relapse risk down! In the meantime, take your husbands advice, live knowing that things do work out...and your attitude is more than 1/2 the battle. Keep smiling- its contagious!!!!
N

 
Old 05-23-2007, 07:33 PM   #7
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Re: Sort of good news....

Erin,

Nikki is right on this one.
I was first told I had MS back in 1998 and a back surgery gone bad.It took me 2 years to walk unaided.I disregarded the Dx at that time.Honestly thought the surgery was the culprit.

I had no signs of MS until September of 2004 and I was re DX in 2006.I started rebif in January and have had 3 attacks and trying to fight off the
4th at the present time.

My lesions are confined to the brain stem area and lumbar area.

Please don't dismiss any symptoms that persist or worsen,keep in contact with your neuro.

I wish my hubby had you hubby's out look.

 
Old 05-23-2007, 10:06 PM   #8
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Re: Sort of good news....

I would have to agree with Nikki and Nuffs I have read all the posts here and they are both dead on. M.S. is different for every one it is impossible to say when the next episode will happen. And you should let your nero know if any thing happens as soon as possible even if you think it is no big deal small things add up. I am like Nikki I was dxed quick but my MRI looked like a connect the dots game.

Last edited by unclesam612; 05-23-2007 at 10:12 PM.

 
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