This Is MS Multiple Sclerosis Knowledge & Support Community

Hi everyone.

My cousin has MS. We have talked about it some but not entirely. Im only slightly familiar with the disease and was wondering if anyone can help me with some questions I have. First, let me give you a little description about her. She is 41. Was diagnosed when she was 35. In those 6 years she only has 3 flare ups(onset Optic Neuriosis, a seizure episode, and some tingling in her check and arm), all of which are in remission. If you would meet her you would never know she has MS. She just finished another marathon and her times are as good as those without MS. She only has about 15-20 lesions in those 6 years, all in brain except 1. She has no disability at all. She is super fit and eats perfectly healthy. In her recent Neuro visit her doctor was excited about her MRI report, I think in the last 3 years she has about maybe 1 or 2 new lesions and they were small. She is currently taking Avonex and her doctor is a happy with it so far.

Here are my questions: 1) is there anyway to make a educated guess how long she will be mobile? (knowing that the disease is unpredictable) 2) is it possible/probably that she could have a relapse that would make her disabled at anytime soon?

I've no idea, honestly, I was only recently dx'd

She's extremely lucky she's had nothing bad so far
I'm envious
I think it depends on the person, case to case
No MS patient is the same
I wish her luck and hope she keeps up w/the marathons
Just remember, lots of vitamin d

MS affects everyone a little differently. It would be impossible to predict the course of your cousin's disease. The figure in this post is the standard model of disease progression for the average MS patient. Note that this is the average, there will be some people who experience worse progression and some that aren't as bad. Thankfully, there are things that we can do to bias the equation in our favor. I would encourage both you and your cousin to read some of the books that have been recommended in the Reading Nook forum and well as some of the posts in the Diet and Natural Approach forums. My own experience was that I was symptom free for 8 years between my first attack and the second one that led to my diagnosis. It's been 20 years now since my first attack and I have been progressing during the last 2 or 3 years. My walking is now appreciably impaired.

NHE

It's worth notin that websites and forums tend to attract people who suffer particularly badly with their illness, this website for instance could give you an incorrect impression as to how quickly and severely the disease progresses as those who are like your cousin are more likely to just get on with their lives and not religiously post on forums such as this...

thanks NHE for your response. Were you diagnosed with MS after your first attack and when or did you take any medication like avonex or rebif, etc. thanks everyone

rodsmith111 wrote:thanks NHE for your response. Were you diagnosed with MS after your first attack and when or did you take any medication like avonex or rebif, etc. thanks everyone

First symptoms: Fall 1991
Second attack: Fall 1999
Diagnosis: Fall 1999
No symptoms during the 8 years between first symptoms and second attack.
Avonex: Spring 2000 to Sept 2010


NHE

NHE wrote: First symptoms: Fall 1991
Second attack: Fall 1999
Diagnosis: Fall 1999
No symptoms during the 8 years between first symptoms and second attack.

You're pretty sure that your 1991 symptoms are attributable to MS NHE?

Lyon wrote:You're pretty sure that your 1991 symptoms are attributable to MS NHE?

Yes. My neuro in '99 was fairly convinced as well.

NHE

Of course it'd be foolish to be too confident but since my wife's diagnosis in early 2006 and soon after Tovaxin treatments it seemed enough time had gone past without disease progression that the clear sailing was due to Tovaxin but Harry at one time had mentioned that Marge went like 10 years without progressing and you went 8 so my wife's 6 years without progression doesn't really put her in the clear.

I wonder what is the longest someone has gone between relapses? Maybe with MS we'll never be able to feel comfortable that enough time has gone by that we can finally quit worrying that the other shoe is going to drop.

Had a single MS-like event (was told It was a virus by a neuro - guess I should thank him as I lived w/o a shadow of MS for all those years) almost 30 years ago and then nothing that stopped me getting on with my life until 2005.
And now I've been told I have SPMS with increased walking/spasticity difficulties in the past 2 years, some brain fog and a bunch of irritating symptoms that come & go. I guess they could be called minor pseudo-exacerbations because non really last more than a day or so.
I have never taken any drugs for MS and am currently taking a list of supplements a mile long based on Ashton Embry's recommendations & playing around with diet trying to decide between the Swank diet and Terry Wahl's reccommendations. But definitely low fat.
Doing this I've lost 20 lbs since last summer and managed to keep the lbs. off over Christmas.
Can't say I feel any better for all this but I keep wondering if I would have felt worse if I hadn't been taking care of myself.
Aside from this I'm working with a PT to deal with spasticity.