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Old 09-18-2006, 08:02 AM #1
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Default What do you think?

Hi there
Glad I found the site. I was diagnosed RRMS just over five years ago, and luckily for me, according to my MRIs I have had little of no progression in that time.

I went to my neurologist last month, and he told me that when I first presented I had so many lesions and so many areas affected that he expected me to become secondary progressive within two years.

Now I have reached the five year mark and all is well he told me that he thinks my MS is benign and he expected I would never have any more problems (other than residual damage that is a pain but I can live with it).

I so want to believe this....does it sound right to you? I use beta, and the doc said it looked like it was working brilliantly (obviously) so keep it up.

Thanks for letting me rave on

Lyn
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Old 09-18-2006, 10:26 AM #2
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Default progression or no progression

First of all, Congratulations!
I think its great that you have good news five years after diagnosis.

However; it was always been my understanding that benign MS was considered after 10 years of no increased disability.

I was diag in 2002. So far so good and my MRI's have not changed. I too inject beta 1b.
My MRI's were really bad and the doc couldn't believe I was the same person standing before her with such a bad MRI.
So, some people show lots of lesions and very little symptoms and some people show few lesions with major symptoms.

MS...the snowflake disease....no two cases are exactly alike.
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Old 09-18-2006, 12:54 PM #3
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Hi Lynn and welcome!

Most neuro's don't use benign any longer....The problem is you may have benign MS but only until it no longer is.

The only thing about MS you can predict is it's unpredictability.

I am very glad you are doing so well and I hope you have many more years of stability.
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Old 09-18-2006, 04:12 PM #4
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Well, I had 17 yrs of benign or MS lite before having my 2nd exacerbation from hell, and then SPMS. I was on no MS modifying drugs, during that time.

So here's hoping that you and my Daughter (who has benign MS) stay that way for many years to come.

Welcome Lynn.
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Old 09-19-2006, 05:40 AM #5
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Hi Lynn and Welcome! This is really a great place for friendship, information and support. I sure hope and pray your ms stays 'silent'. Looking back, think I had it way back in 1976 after optic neuritis, but wasn't diagnosed until 1990 with RRMS. It stayed fairly inactive until the past two or three years when it moved to SPMS.

I'm really thankful it wasn't a problem when my kids were growing up, it's bad enough now that I can't 'play' much with my grandkids.

Good luck to you......Judy -- aka msproperlady
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Old 09-19-2006, 06:29 AM #6
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Lynn, Hi from another Aussie! There aren't too many of us around here, don't know why, as the forums are excellent. Which state are you in? Glad to hear your MS is pretty stable at the moment - fingers crossed that it stays that way!
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Old 09-19-2006, 06:16 PM #7
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Thanks everyone for your kind words.

I still have fatigue, bladder, balance and vision problems left over from my first (recorded) exacerbation. But if this was as bad as it gets - thank God!

Guess I will just have to wait and see, I know it is really unpredictable but I left the doctors office walking on cloud nine.

I live in NSW Chez - out in the west (major drought area). I think from memory from the old forum, you are in Vic - is that right???

Cheers
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Old 10-24-2006, 12:13 AM #8
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Default Brain Anuresym?

I could be mistaken but I thought you were on the Anuresym Forum. Anyway, I was shocked to see you on the MS Forum because I am currently (well since last February) been going through so many tests because they thought (Or think) I have MS. While I had the MRI they found multiple Brain Anuresyms that I had coiled in April and June. My surgeon said my symptoms had nothing to do with the anuresyms. I now have joints that do not bend! I can only touch the side of my thighs with my thumbs. my shoulders feel like they are fused! But my surgeon laughed when I told him how they discovered the anuresyms. He said the chances of you having MS and anuresyms is a billion to one and that it was ridiculous. Hum.... Do you have anueresyms and MS or am I crazy and thinking of someone else? I know I am rambling and not making much sense. I hope you can make sense of this!

Respecfully,

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Old 10-24-2006, 12:56 PM #9
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Default menopause

This statrement is a total crock. My current neuro says that MS in women tends to burn itself out a bit after menopause, so there is a good reason not to mind getting older.

I am 58 years old, had MS since 1972 and I am getting worse all the time.
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Old 10-24-2006, 01:46 PM #10
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Quote:
Originally Posted by gonnamakeit View Post
This statrement is a total crock. My current neuro says that MS in women tends to burn itself out a bit after menopause, so there is a good reason not to mind getting older.

I am 58 years old, had MS since 1972 and I am getting worse all the time.
Is it a crock? Who knows. This disease is different for all of us and who's to say that for some MS may burn it's self out but not for others.

I have heard that statement made by more than one doctor but I have never heard how we would know if MS burns it's self out. Even if your MS burns it's self out I would really doubt the damage that you may already have will improve.

I do find the thought of this disease being able to burn it's self out quite interesting - so many unanswered questions
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