Don't know how to feel
 

Hi All,

After developing double vision in September last year, I gradually went down the DX road to MS.

There were quite a few legions found on my initial MRI results.

After about 6 months I had another MRI, but with contrast this time. My Neurologist told me that it was good news, as they did not see any active (or new) legions. He also said that it was unusual that so much time has gone past with no other symptoms.

He has been very clear that I have MS, but it is coming up to a year now and apart from the 3/4 weeks of double vision, I have experienced nothing else (apart from the fear that every little thing is related to MS :)).

This doesn't seem to fit with other people's experiences (from reading online, a friend I know with MS and a friend who wrote a paper on MS) and I just don't know how to feel about it.

It's almost like I can fool myself into thinking I don't actually have it, but I don't want to do that. I think it is stopping me from fully dealing with it though.

I've been told I could be in a dormant phase that could last for another day or could last for years...

Has anyone else been where I am? I kind of feel like a fraud writing on this forum as I know some of you have a very difficult time. I don't mean to offend or seem ungrateful. I just don't really know who else to ask.

S.

That is probably your answer.:)

I was 1st DX in 1976 and had a long remission/dormant
stage, until 1993. Don't question it, enjoy it while it lasts.:hug:

Unfortunately the thing about MS is it can be relatively easy for years and then bam, it gets ya. :mad:

I think Sally gave excellent advice. I feel blessed now and plan to work like a fiend until I am no longer able.

Sally could not have said it any better. Ive had it for 21yrs now, and the first 19yrs I seriously almost forgot I had it. Enjoy the peace and quiet while you have it, because like the other poster said, BAM!!!! , it can hit anytime, without warning.

There are milder cases of MS. Everyone is different. I was diagnosed with optic neuritis in left eye (but still had 20/20 vision, only like looking through something smeared with Vaseline) and mild headaches. The only problem I have had in the past 6 years since diagnosis is fatigue from heat mostly and the vision issue. (KNOCK ON WOOD!) :).

Then again I have been on Tysabri for 5 years, although I couldn't tolerate interferons or copaxone. I'm glad I went on Tysabri and got aggressive with treatment. Going medication free was not something I ever considered.

I still work full time and am not limited by anything except heat. And speaking of which, it was 99 degrees today and after running errands, it just about wiped me out!

The first year of my MS, given the fact I got multiple opinions and failed on Copaxone and Rebif after a short time, I really wasn't being treated. And nothing happened the first year. So it is possible to start slow with little to show.

I should add I have many lesions on my brain and even "black holes" which are evidence of permanent deep damage.

Thanks for the advice all.

I guess it's just been hard to relate to a lot of the stories I hear from other people with MS because I feel fine at the moment.

Point taken, make the most of it!

My Neurologist also said that with only one attack, they wouldn't necessarily recommend starting medication but the choice was mine.

My thoughts are, if the side effects aren't bad, it would be better to start early. Any thoughts?

S.

Just because it can hit hard doesn't mean it will. I don't know howw to search for such material, but after living with MS for over 13 years and being on message boards for most of that time, I've learned that people whose first symptoms are either sensory or vision problems (mine were both, years apart) have a much less aggressive course of MS. Please understand that with MS there are no such things as "never", "always", or "everyone".

Enjoy your situation while you can, and may it last forever! (it could :))

Thanks Sparky!:)

Sam,

I am in the same place you are. I had an initial episode of hearing loss that led to an MRI showing a couple of lesions. A couple of years later, a follow up MRI showed more lesions and I got an MS Dx. The initial hearing loss was in 2004 and the Dx came in 2006. Other than some fatigue issues and being slightly more sensitive to heat, I have had no MS flares or symptoms since my initial hearing loss. I have had the same conversation with myself about whether I was a "fraud" for wearing an "I have MS, that is why I ride!" jersey when I ride the MS150. Yes, I have the disease, but I have thankfully not suffered many of the problems that others with MS have. The way I make peace with it is to ride in the MS150 every year and be an ambassador locally talking to folks about how many different ways MS affects people and how much more research is needed to understand why some (like me) have an easy time with it and others do not.

People with MS are like snowflakes--no two are exactly alike.

I have MS, and so did my father. Dad was diagnosed when he was 39, probably 2-4 years after his first symptoms. He gave up his driver's license when he was about 45 because his legs/feet didn't always move when he wanted them to. If he'd been able to get a car with hand controls, he would have kept driving.

Dad didn't feel it was in his best interests for his employers to know of the diagnosis, so we didn't tell anybody. For 17 years after giving up his license, he walked to the paper mill (a mile each way) and retired at 62. He NEVER missed a day of work in those 17 years due to MS.

My dad died a month before his 80th birthday, of COPD. Most people never did know he had MS. He had sporadic episodes of numbness and tingling, some balance issues, drop foot, and fatigue. But he mowed the lawn, shoveled snow, worked in his wood shop, went fishing, enjoyed his life. He was still going up and down stairs under his own steam three days before he died.

Dad's MS never worsened significantly in over 40 years. Will this be your course? Who knows. You are a different snowflake. But for SOME people, "the worst" doesn't happen.