Know anyone with MS?
 

After months of strange symptoms that my doctors could not explain I had an MRI of my brain. It came back with evidence that suggests MS. Some lesions and evidence of myelin delamination... That is about all I can remember the doctor saying as I was in a mild state of shock as soon as he said "MS".

I will go to a neurologist next week for further tests. So do any of you guys/girls know anyone that is living with MS? Besides Jack Ozborne....:D

My Dad died of ALS (Lou Gherigs, very similar to MS but not hte same)

First, I'm very sorry to hear about your diagnosis, but stay positive. Being diagnoses with MS is not as bad as it was 20 years ago. Betaseron and other interferons have worked pretty pretty well at reducing chronic symptoms and slowing the progression of the disease. Even the newer common steroids are pretty could at controlling the acute symptoms.

I have a very good friend who was diagnosed at 35 with MS, that was back in 1988 (26 years ago). He uses a cane now because his legs can get a little unstable, but otherwise he's doing pretty well.

Again, stay positive. If you smoke, quit. If you drink too much coffee, slow down. Make some healthy lifestyle changes and stick to the therapeutic regimen your doctor gives you.

Most importantly, remember that the people who participate and post on internet disease support forums are always worst case scenerio...or worse, Chicken Littles. Reading those will only depress you. I know. I'm dealing with a syringomyelia. After reading the support forums I was reading to kill myself. My outcome has been very good and 15 years later I hardly have any symptoms. Try to stay off them.

ALS and MS are two completely different diseases!!! People can live 50 years with MS.

And people can live a very long time w/ ALS as well. Look at Stephen Hawking. FWIW it wasn't the ALS that killed Dad (sorta). He was 72 and had a massive heart attack - which is how his father, brother, and a sister died. He *might* have survived the H/A if he didn't have ALS, but I doubt it. Lung function was fine, he was still able to transfer himself from bed to scooter and back, take a few steps w/ a walker, etc.

Thanks for all the positive responses. I am hanging in there and will continue to do so. Too many good reasons to live.

Actually, I do know Jack Osborne. He's a great guy. :)

But if you still want my input, I've known several people with MS and it can be a fairly slow-moving affliction. At least in some cases, I don't know all of the variables in disease progression.

When I was a boy, (maybe 12 years old), I used to care for my neighbor part time who had very advanced MS. She was middle aged at the time and quite disabled. I'm not sure how long, (maybe a decade or more), since the onset in that case. If that had been my only exposure to the disease, I'd have a much grimmer view of it. As it actually is, I know several people living their lives with MS.

Let's hope that you don't have it, and if you do, it's a mild case. All the best.

I dated a girl with MS for 5 years. She had an early diagnosis at 19 yo. I recall the occasional flare-up that varied in symptom and severity, which overall didn't seem to slow her down that much. She has been managing it now for almost 20 years. She even recently had a baby. So hopefully this isn't a huge impact on your day to day existence.

Unfortunatley it will probably mean an end to my Army career. Its been a little over 20 years so it would have been time to go soon anyway. Now I need to figure out what is next.

My brother has MS

Well, thank you for your service and best of luck in future endeavors. Attitude is everything but I'm guessing you already knew that. :)

Hi Matt
My wife has MS, diagnosed about 12 years ago. MS is unique to each person that has it. So, don't look at others who have it and think that is where you will be in the future.

We still do lots and have fun. I hope things work out for you. Stay positive.

Steve

Sorry for editing out the personal parts of your post Steve, but I think your advice is good. I know (too) many folks who have MS and my family history makes a good argument that there is a genetic component to it - my Grandmother (Dad's Mom), Dad and 2 first Cousins (Dad's sister's daughters) all had/have it. I know a small handful of people, young & old and male & female that live, what I would consider to be, very successful lives with MS.

There are different Courses of MS and as Steve mentions, while there are commonalities, it is unique to each person.

Dealing with health issues is not fun. I wish you all the best whether MS becomes a part of your life or not.

Tom

I was diagnosed with relapsing-remitting MS about 8 years ago. For the most part, I've been largely symptom-free except for the occasional tingling in one leg or arm, and relatively minor paralysis in my left hand and arm that lastes up to several days (but usually less than that).

About 2 1/2 years ago, the optic neuritis effecting my right eye got worse, but that has been the only notable change.

My reflexes and eye-hand coordination aren't what they once were, but how much of that is the MS, and how much is just normal aging is unclear.

I've been on meds that significantly reduce the frequency and severity of the attacks, not that they were all that severe to begin with.

Yes, this is a chronic condition that requires some attention, and talking to a good neurologist is essential, but it is far less troublesome than my friend's diabetes or lots of other things.

It is, however, very notable that there is a big difference between my type of relapsing-remitting and progressive MS.

One of the biggest problems, and you see it right here, is that there is a LOT of misunderstanding about MS. It is NOT a fatal disease, it is NOT ALS, etc.

One very good thing is there are a lot of web sites for info & support groups.

A good friend has MS, developed late in life, and the good news is, those who develop generally don't end up in a wheel chair and it isn't a death sentence, slow you down a bit, yes, but not going to end your life. Good luck & thank you for your service..

A female guitarist in our church band has had MS for a long time (at least 10 years) and it hasn't slowed her down. Our friend from CA has it and he manages it very carefully and had a few relapses but it's mostly in remission. He's had MS for at least 20 years. I wish you the best and will keep you in my prayers.

Sounds like it's not even confirmed yet so wait for the other tests. They'll probably do a protein eval on your spinal fluid...no big deal. MS is not common in men as it is in women and usually people under 40. I had a tentative dx of MS last summer but turned out not to be...mine, however, was likely a stroke but not serious....I'm pushing 70. Anyway, like every one said, stay positive, day at a time and get good info from your docs when they do get it figured out. Not as bad a dx as it used to be...

Mark is right - you only have one diagnosis from one test. It probably isn't even called a diagnosis rather than a indication. For a diagnosis, they'll want to see a lot more. I am no expert, but it is likely not enough to see a signal on a single test to make a call. I have had medical tests before that came back with scary results but further, more comprehensive tests showed it was a false positive. Most medical tests that involve imaging or coarse measurements have high false positives. I would fire up an extensive Google and start digging in to find out what the false positive rate is and what the highest accuracy tests for MS are. Then ask for those. Until then, I'd try to stay calm and discount it.

Good Luck!

G

Let me add that I was nervous when that word was mentioned to me too so I don't blame you for your initial shock... The differential diagnosis list is likely longer than you know...it's how these things are done...rule them in or out. Stay as calm as you can and let them do what they need to do.. Having said that, I think I know half a dozen women with a recent Dx of MS and they are fine and live normal lives for the most part...it's mostly a woman's disease anyway from what I hear...

I hope you don't have it Matt. Don't go thinking worst scenario just yet as it is a tricky thing for the doctors to diagnose (without the second/third set of tests.). Good luck.

Just wanted to send along my best wishes Matt. You are well prepared for this "battle" too...good luck with wherever this new path takes you! Good luck, and hopefully this one is just a false alarm!

A very good friend of mine has severe MS. At age 14 he had a titanium rod installed to support his spine. Docs said he wouldn't be able to drive a car at 21 years of age, and probably would be in a wheel chair soon thereafter.

He was the first in his family to graduate college, obtained a degree in Kinesiology from the University of Texas. At nearly 40, he still drives and is not in wheel chair. Sure, there are times when his body says enough is enough and he shuts down. But he won't give up.

If everyone had the drive he has, this world would be a far better place.

Best wishes, Matt.

My wife was struck with optic neuritis this week. She's a 787 pilot, and a military flying squadron commander. Her (our) life and future just changed in a big way. Still awaiting a lumbar fluid test but things aren't looking too good so far.

I have never known anyone more focused on their goals or more deserving of their achievements. I'm still in the shocked and pissed stage.

http://forums.pelicanparts.com/uploa...1442639767.jpg

My wife was diagnosed with MS many years ago (probably 40) and has had various symptoms with vision problems and numbness. Has been on Copaxone (daily injection which she administers herself...and recently changed to 3X / week). She has never had another symptom since she went on the shots probably 10 or 15 years ago. Have your doctor check it out.--Dave

Sorry to hear this.

I remember reading many years ago that Jimmy Heuga (Olympic skier) was diagnosed with MS. His is an interesting and motivational story.

Unbeaten by Multiple Sclerosis, An Olympic Skiing Hero Helps the Handicapped to Get Physical : People.com

Best of luck and never give up the fight.

My sister was diagnosed with MS at 20. It's been about 40 years and she's still doing great. Has a slight limp and limited use of her right hand though. Not sure if she's on any meds.

Good luck!