Hello all. About 6 months ago I was on street duty when I started getting lightheaded. Kind of like that feeling you get when you stand up too fast, only it didn't go away. I thought it was nothing, so I pulled over and got out of the patrol car and stretched a little bit. Well, to make a long story short...I still have it. It's not as severe and overwhelming as it was for the first month, but it's still here.

I went to an ear/nose/throat doctor because I thought I might have an ear infection or something of that sort. He found no signs of infection, so he sent me off to get an MRI. About a week later, he called me back and told me he made an appointment for me at a Neurologist. I asked him why and he said "just for good measure."

After seeing about 4 different Neuro's, and going through a 3-month-long battery of tests, I finally got a diagnosis on December 16th. It was "probable" Multiple Sclerosis. "Probable" because there is no real test for M.S., they just rule other things out. Needless to say, I was shocked....and pissed. Nice Christmas present, huh?

I'm only 25 years old. I am a Police Officer, and I just made the Special Weapons & Tactics Team in November. How this will affect my career, I have no idea...but I'll be damned if this will stop me from doing the things I have always done...let alone force me to quit the job I have worked so hard to get. I don't even think I will tell anyone at the station about it.

The doctors say I'm "lucky" because I caught it so early. And with the medications available today, it's very unlikely I will ever be disabled by the illness. The medication I will be taking is called Rebif (interferon beta 1-a), and I need to subcutaneously inject myself every other day. This crap costs $1250 a month! Luckily I have insurance, so it's only a $15 co-pay. Also, when I have a "relapse," I will be given cortiosteroids to make the swelling in my brain go down.

Now, I'm not a weak-willed person to say the least, and to be quite honest...I think this is [censored]. But I found myself asking stupid, unanswerable questions like "Why me? Was I a Nazi Stormtrooper in another life or something?" Then came the denial part, I started doing extensive research on the subject and my symptoms...and would call my doctor every week and say "Could it be this, could it be that...?" None of that crap helped. Basically, I'm just trying to make the best out of it. Not taking life for granted, not sweating the small stuff, and not lettting anyone get in the way of my goals and dreams.

I'll tell you one thing, I have the best damn friends/girlfriend/family/etc. Everyone was so supportive (almost too much) and willing to help in any way. The hardest part is trying to explain to everyone what it is, what it isn't, and what the long-term effects are. Thing is, I have no idea...and neither do the doctors. It's so unpredictable. I could wake up one day and be blind or paralyzed...or I could start the interferon treatment and it will just go away forever. Only time will tell. I start the treatment sometime next week. They also provided me with this cool "auto-injector" thing. All I do is insert the syringe, stab myself in the leg <img src="images/graemlins/smile.gif" alt="" /> and hold it there for 10 seconds. Not cool, but better than actually watching the needle go in IMO.

They just completed testing of a new drug called "Antegren," which should be approved by the FDA in November 2003. It supposedly reduces the scar tissue on the brain (which triggers relapses) by 75-95%, and reduces the relapse rate by 45-75%. Sounds promising, I just wonder what takes the FDA so long to approve the drug.

Anyway, thanks for reading this...I had to get it out and actually see these words in front of my face.

-John McIntire

John,

I am very sorry to hear your news. It sounds to me like you have a good attitude to approaching this new challenge in your life. I am sure you will be just fine. My boss is going through a very similar situation, where the doctors have given him test after test and told him he had possible MS, only to change their minds again later. I'm sure he well understands your frustrations. All I can do is wish you the best of luck and the best outcome possible.

Greg

John,

For what it is worth, my prayers go out to you. Do not despair, remember those who do not survive, are often the ones who give up. Fight all the way kicking and screaming. It appears you have done your homework; knowledge is, as we all know the first tool in survival. At 48, my body is giving me the signals that my participation in rescues will someday come to an end. I do not look forward to that day, but recognize we all have some limitations imposed upon us by time. When things seem down, draw upon the strengths of family, friends and those here, it is NOT a sign of weakness, but of being human. Pete
<img src="images/graemlins/grin.gif" alt="" /> (smile it good medicine)

John you get all my best wishes for the future. I'm not trying to raise false hopes, but my mother-in-law was diagnosed with Alzheimers by one of those 'we rule everything else out tests' and put on a course of tablets for four months before a second consultant said that it probably wasn't Alzheimers. Good luck anyway.

John,

Yeowww! What a kick in the teeth.

Something that I've found when dealing with such things, is that it really helps to write / type out your thoughts and feelings. There is something in doing that that helps one to deal with the problem. Having a good support group certainly is in your favor as well.

While there is probably little in the way of a cure that many folks can give you, just the fact that you have friends that you can share your feelings and emotions with will do a lot to clear the mind.

Hmmm... <img src="images/graemlins/confused.gif" alt="" /> just an quiet and thoughtful offhand observation here, not preaching...

Please be very careful with the idea of not saying anything to folks at work. It is a very tempting thought, however, if would probably be counterproductive in the longrun, should it be determined that the diagnosis is correct, and if there were an accident or other issue at work, it could be determined that this was just cause for disallowing benefits or something.

Con$idering what the monthly Rx seems to be, it could really hurt. I'm not a lawyer /doctor / human relations department person, just a concerned voice among your friends.

Best Regards,

John,
i'd like to be able to say I know how you feel, I'm sure everyone would, there is however no way we can , this is a very private thing you are going through and all we can do is listen. Good on you for being brave enough to share this with us. At the best we are all folk who have something in common but, indeed we are all strangers and letting a bunch of complete strangers know your most intimate worries must be hard. What I would like to say though is I wish you all the best and have no doubt you will fight this all the way.

All the best for the future

Dave

John

Really sorry to hear about your MS.
I dont know anything about MS, but just want to share this with you.

My mom was diagnosed with a tumor. I cant spell it, but it sounds like 'pheochromacytoma' - Hopefully one of our ETS 'Docs' will correct me. Well, it took 10 years to locate the tumor, and after having it removed, at a high cost, my moms health changed drammatically. She felt great, and decided to ditch her EXPENSIVE coctail of medication.

3 months later, a second tumor was diagnosed. I can only pray and hope this isn't another 10 year struggle. I am not preaching to you, just sharing something that my family learnt the hard way - $$$ are no substitute for health

Keep well.

Thank you all for your kind words, support, and advice! The spinal tap went alright. I just hate when the doctor says "Oh, this won't hurt a bit," nevertheless...it hurt like hell. Again, a heartfelt THANKS goes out to all of you! <img src="images/graemlins/laugh.gif" alt="" />

John Mcintire

John,
I'm terribly sorry to hear of your diagnosis. I hope it is a mild case and you are spared the worst effects of your condition (if indeed you do turn out have it at all). I have personally observed two people with significantly different cases of MS during the first few years of their learning to live with it. Their stories are illuminating in their contrast.

The first week of my (1980) sophomore year of High School, I noticed a new figure in the halls. He was tall, extremely (way too) skinny and hunched over a cane, looking at the floor. He was wearing a backpack (which I assumed was full of books, since his hands were both on the cane in front of him) and moving so slow that he was practically standing still. He would move one foot about an inch forward, then the other. I noted his presence, which was not so unusual in our school (we had two guys and one gal in wheelchairs and about a dozen deaf students), and that was it. Or so I thought.
About a month later, I finally got a look at his face and recognized him as a good friend of mine from Junior High named Charles! I was shocked, and asked him what had happened. You guessed it... MS! Charles was always awful in P.E. & sports. He was a bookworm, quite the brainy type and scrawny as all get out, but he was a great guy and a good friend. I truly couldn't express how sorry I felt for him. He hated it, and was vocal about it. But he was also resolved. He couldn't change it, he said, but he would do whatever he could! He was not going to quit fighting the condition!
Over the next three years, he taught me a powerful lesson, as he managed his health treatments, diet, exercise, stress levels and I have not idea what else. By the time of our High School graduation, he was walking slowly without the cane, looking and acting pretty much like any other normal person.
As the web and email came into public awareness in 1995-6, we found each other in cyberspace and caught up on each others' lives. He is now a multi-lingual world traveler, and had spent more time since graduating college out of the U.S. than in it, constantly on the go. He still has MS, but it's pretty much just a technicality in his life, with no real effect.

In college, my girlfriend's (1986-7) dorm roommate was diagnosed with MS. Her symptoms manifested as, essentially, bad grades. She couldn't recognize when she was having problems and when she wasn't, and was truly baffled by the way her grades would plummet across all her classes at certain times. As her problem progressed, she began manifesting difficulty with fine motor skills. Once diagnosed, she was told that, as long as she 1) got 8 hrs. of sleep nightly, 2) drank very few (or, preferably, no) alcoholic beverages, 3) did not smoke, 4) exercised daily, 5) ate healthily, 6) took her medication and 7) avoided stress, her symptoms would vanish and she could and would live a perfectly normal life. This was, indeed, borne out by real life experience over the next few years.
Her resentment at "being sick" was so great, she rebelled. Partying caused her grades to plummet, until her lack of coordination grew into falling down and walking into things. Then, she straightened out and began her personal care regime... until her bitterness at not being "normal" returned, and she refused to take her medication. After her symptoms grew to slurred speech, she again began to take care of herself... until she felt like she was missing out on too much of the "fun" of college life and began partying "only some" again. When her symptoms grew to blackouts and unconsciousness, her bitterness increased. As time went on, she increasingly became a resentful, self-pitying young woman who barely took care of herself and blamed "her disease" for her problems. Every (short-lived) time she would actually practice her regime, she straightened out almost instantly. Her normal functioning would reliably remain until she began drinking, staying up too late, eating junk food, etc. Then, she would almost instantly relapse. If her relapses lasted long enough, her symptoms would worsen... until she shaped up again.
I don't know how her story ultimately turned out, if indeed it yet has.

I won't belabor the moral of these two tales , as we all can see it instantly. I'll just say, please take care of yourself. The next half dozen years are not the end of your story! Even if the disease kicks your butt in the short term, the future can still belong to you!

Jet: A truly magnificent post !!!

Thanks for the info J.T. It's weird that you mention alcohol and cigarettes. Me and my friends were always known as the "partiers" in school and out. So I've had my share of fun, I guess you could say. The night before my first exacerbation mentioned above, I drank about a twelve pack and took about 7 or 8 shots of Jagermeister, with little sleep to back it up. The doc said that's probably what triggered it. And every time I smoke a cigarette, the lightheadedness gets a little worse for a couple of minutes. Just one more reason to quit! I have always been active in Martial Arts, exercised regularly, but my sleep pattern and my diet need to change. As I add this new medication into my life, I will definately take the time to make some other changes for the better. The way you live your life can truly change the way this illness progresses. Thanks again!

John McIntire

John,

This was on the BBC Science webpages today (21 January):

Scientists have successfully replaced brain cells damaged by multiple sclerosis (MS), raising hopes of an effective new treatment for the disease.
At present, the technique has only been tested in mice, but it is hoped the same principle can eventually be applied to humans.

A team from St Vincent's Hospital in Sydney replaced the damaged brain cells with immature 'stem' cells taken from the bone marrow of both mice and humans.

Multiple sclerosis (MS) is a chronic and progressive illness that affects the body's nerves and can render a person disabled.

Myelin coating

The disease progresses as a patient loses a type of nerve cell known as an oligodendrocyte, which helps electrical currents to travel around the nervous system by producing the protective myelin sheath that coats the nerves.

As more and more cells are lost, the myelin sheath is damaged, resulting in faulty transmission of nervous signals.

The two-year study used 25 mice to model the effects of multiple sclerosis. Adult stem cells from mice and humans were injected into the mice, five, 10 and 20 days after being isolated from bone marrow.

Signs of oligodendrocyte growth were found in between half and three-quarters of the experiments.

The next step is to determine whether the newly formed brain cells were functional and capable of producing myelin.

Effective therapies

Professor Bruce Brew, St Vincent's director of neurology and neurosciences, said: "While we are still some years away from a human application, the fact that we are able to use adult stem cells in this way is extremely important in the development of effective therapies against a variety of brain diseases."

He said there was no guarantee that the treatment could completely reverse symptoms of MS.

But he said there was a "good likelihood" that it could have some positive impact.

Professor Brew said doctors may eventally be able to isolate stem cells from a patient's bone marrow, manipulate them and reinject them to hone in on the damaged area for repairs.

However, the research is based on the principle that stem cells will develop in response to signals generated by brain disease.

Professor Brew said the longer a person suffered from a brain disease, the weaker the signals became and the less likely that the stem cells would differentiate into the required cell.

Good Luck, Scott.

Wow! Thanks Scott, the info is truly appreciated! It amazes me the medical strides that are made everyday.

John McIntire

I realize this may be a bit late, considering your initial post was nearly a year ago (oops, got the dates wrong, I was looking at your reg date!), but I just wanted to let you know that my mother was diagnosed with MS over 20 years ago. My mom is a nurse and my father was a doctor, and I can tell you that sometimes knowing a lot about medicine only makes it more frustrating that no one really know what causes MS, or how to cure it.

The long and short is, it's usually diagnosed in the 20's or 30's, no one knows if it's in any way hereditary, and it will get worse--for some people the progression is slow, for others it's quicker.

My best advice--make sure you get *lots* of exercise to keep up your muscular strength and flexibility. It will really help, not only physically, but mentally.

My mother is now 56 years old (34 when diagnosed, I was 12--now I'm 34 and crossing my fingers! I recently had a scare with tingling in my leg that lasted a couple of weeks, and I couldn't move my toes--turned out it was probably nerve compression from sitting in a crappy chair in front of my computer, but sometimes I wonder...), and she's still copingpretty well, although she is unable to stand or walk for long periods. She still works, though in a less stressful job for the county health dept. rather than as a nurse in a busy hospital.

Keep a strong body, and a healthy attitude, and you'll be much better off. I can tell you the corticosteriods really suck, but then, so do most medicines. We learn more about MS every year--hopefully by the time you reach 56, we'll have beat it once and for all.