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

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.

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.

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.:)

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

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!

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
Lyn

Good memory Lyn! - I'm on the border of Vic & SA, and I'm sorry to rub it in but it's raining here at the moment, although we've had a really dry winter and the farmers are all crying drought too. Are you on a farm/property?

Chez

If I knew how to blow a raspberry at you online I would! :p Wish it would rain a bit more here.

We aren't on a farm, we live in town, but a lot of my friends are on properties and it is heartbreaking to see them facing this year after year.

NOTHING would convince me to go onto a farm - too unpredictable, I am too much of a control freak. Maybe that's why MS is hard - I can't conrol it, although I am working on it. lol

Cheers
Lyn

It seems that most prople with MS are Control Freaks.
That's probably what got us here..:eek:

Am very glad for you and truly hope it stays quiet.

My old neuro told me that how I was at the ten year mark was a very good indicator of the years to come. 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. ;)

Some suggestions:
Take very good care of your overall health.
Reduce your stress and learn to evaluate what is important to you and how to say no. It is so easy to do too much.
Rest when you need it. Fatigue can deepen if you try to push too hard.
Avoid people who are energy vampires.
Be kind to yourself.

best wishes, m

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,

Boo Boo:) :)

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.

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

same quote
 

This quote or something similiar has been around on forums before and usually the old timers, such as me, jump in to dispute it.

It is an old wives tale that the damage stops at menopause.
Some people aren't even diagnosed until their late 50's and 60's.

Oh honey, I am definitely not new to MS or MS message boards.

So I guess you have more knowledge of this disease than MS Specialist and those well known doctors that now show up to speak at MS conferences.

It is true that even older people are being dx'd but that still does not mean MS can't burn it's self out for at least some....unless you have some proof other than your own experience to share.

BTW - I'm not saying it's true or not I just find it interesting.

MS is so so unpredictable, that the only thing that you can be sure of is it's unpredictability.;)

I had my first major exacerbation in 1974, went through early "Mini paws" starting in 1980, was in remission 'till my second excerbation from He**, in 1992 and SPMS by 1996.

I would have believed this old wives tale, back in the 80s, but not anymore. Stupid scummy disease.:mad:

Keep your hopes up, it's all we have.

I have a hard time calling it an old wives tale when neuros are still saying MS can burn it's self out....It's not like PwMS keep this going it's the neuro's that are telling their patients.

Is it true....who knows. If someone has managed to have MS burn out I don't think you will find them on a MS message board;)

And what does burning it's self out really mean?

Like I have said before the concept of MS burning out is very intersesting to me.

Hi Snoopy:)

What burning itself out means to me is that some PwMS may reach a plateau, when they are no longer having exacerbations..SPMS, maybe.

I am at a plateau and have been, since my start with LDN. I like to think that the LDN has stopped my progression, but who really knows for sure. It may just be the nature of my particular MS.

Right now, the only thing I am progressing in, is AGE
:eek: , and they haven't found a cure for that either! As far as the "Old Wive's Tale" , I'll change that to "A Condecending Old Neuro's Tale" :rolleyes:

Sorry Snoopy, but there is no scientific proof that women "burn out" at menopause. Some may and some may not, depending on the course of their MS, but I doubt if it has anything to do with "The Change of Life" .

Hugs,

I totally agree - there is no scientific proof that MS does or does not burn out nor do I think it has anything to do with menopause.

My thought on what *burn out* means is pretty close to what you wrote.