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Old 08-29-07, 12:39 PM   #1
permanentjaun
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Multiple sclerosis - Anyone have personal experience with it?

One of my friends has just been diagnosed with multiple sclerosis. He's only 23 and played collegiate football at a D1 school. He began experiencing severe and consistent back spasms. They were so bad that even at the highest legal dosage for drugs that doctors could put him on, he was still in severe pain. It's very unfortunate.

I live across the country from him so I don't know what is going on. I read the wikipedia site that it is a central nervous system disorder that slow degenerates motor ability. I was hoping some of you could give me a better idea about how he will develop into the disorder. Last I saw him 3 months ago he was still walking and talking fine, except for the fact that he was on some heavy pain killers and was out of it a little. Will he eventually not be able to walk? How long would that take to go? What can I expect my friend to be like in a year, two years, etc? Thanks for any info or advice. Matt
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Old 08-29-07, 12:41 PM   #2
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Too many variables, juan. My sister in law has MS and treatments have her in remission right now. She's been diagnosed for 5 years so far. It just depends on how well things work.
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Old 08-29-07, 12:45 PM   #3
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Too many variables, juan. My sister in law has MS and treatments have her in remission right now. She's been diagnosed for 5 years so far. It just depends on how well things work.
Yeah, lots. I have a good friend in OR who goes thru long months with no symptoms, then she has a flair up - the last time she was on some potent steriods (to minimize damage-scarring on brain) - that made her hyper - and then after each attack she goes and has extensive tests to see if the attack left with her with more scarring, etc. She found out about it about 3 yrs ago.
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Old 08-29-07, 12:47 PM   #4
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Unfortunately, MS is very unpredictable. I have a friend with it. When things are good, you would never know it - she can out-run/cycle/hike/climb me by far. When they are bad, she loses vision, can't walk & is very tired.

I'm sorry to hear about your friend. Good luck to him.
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Old 08-29-07, 01:00 PM   #5
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Are the periods of flair ups typically equally as long as the periods of remission?

Will he be able to continue any career like anyone else? I understand what you guys are saying about too many variables. What does one do with a career when all of a sudden you can't see? Do US laws prohibit businesses for releasing someone because they have an MS flair up that could last over a month?
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Old 08-29-07, 01:04 PM   #6
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I have no personal experience with MS, but I do know what it is.
Surrounding some of the nerves that traverse the human body, there is a sheath called a myelin sheath. MS attacks this sheath and destroys this covering. This causes the nerves to "short circuit" in laymans terms. Symptoms can be changes in sensation, sight, taste, muscle weakness, coodination issues, speech problems, cognitive impairment, pain, and the list goes on.

It is a progressive condition that seems to flair up and then go into remission from time to time. The current thought is that it is an autoimune condition, but some believe it is a metabolic disorder.
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Old 08-29-07, 01:07 PM   #7
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It really depends upon the type of MS. My sister-in-law was diagnosed with primary progressive MS a little over two years ago. That's the bad kind. (Not that there's a good kind, but you get my meaning.) With primary progressive, the condition generally never goes into remission. It just keeps getting worse. Drugs and therapies can slow things down at this point, but there's no stopping it entirely.

In contrast, the recurring remitting type of MS can be almost completely halted in some people. I don't know how long the remission might last, but I believe it can be quite a number of years.

I am fairly sure that MS is considered a disability under US law, which means that an employer cannot let someone go purely on that basis. There must be reasonable accommodation offered to the employee, if asked for. The exceptions are if the employee literally cannot do the job because of their condition or if the employer can show that any accommodation would be so burdensome that it is no longer "reasonable." Obviously, this is pretty nebulous, and it's a more complex condiseration than what I've laid out here, but, suffice to say, protections do exist.
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Old 08-29-07, 01:20 PM   #8
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Matt, sorry to hear about your friend's diagnosis. I certainly do understand the surrealism involved with facing that. These kinds of things are supposed to happen to "other people," and not to the ones we love and care about. I salute you for seeking information to help you to better understand what your friend is facing. I've only known one person with MS, a coworker, and so do not feel that anecdotes from me will be of any great help to you, as each case can be very different in progression and prognosis.

However, from personal experience in researching medical issues online, I can offer you these five very fine medical websites, all of which can provide you with good, sound information, at a level that doesn't require a high level of medical literacy. I urge you to read them all (yes, perhaps more about penguins than you wanted to know, but the more you know about MS, the better you can support your friend).

In no particular order:
http://www.nationalmssociety.org/sit...m_gen_homepage
http://www.nlm.nih.gov/medlineplus/m...sclerosis.html
http://www.ninds.nih.gov/disorders/m..._sclerosis.htm
http://www.webmd.com/multiple-sclerosis/default.htm
http://www.mayoclinic.com/health/mul...erosis/DS00188

I hope your friend fares well, as many who have MS do. In any case, ((hugs)) to you, and thanks for being a concerned friend to him.
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Old 08-29-07, 01:25 PM   #9
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Funny story: about 10 years ago, my aunt-in-law was diagnosed with MS. She got on a med regimen where she'd need to take a series of shots every Friday, and she'd be knockered through Saturday into Sunday. Before her diagnosis, she was a vivacious, outgoing, social butterfly...after getting on the meds, she didn't go out, didn't have much of a social life at all, and retreated within herself.

About a year ago, it was determined that, ha ha, she was misdiagnosed. She was still sick, but both Scripps and the Mayo clinic didn't know what was wrong with her. They pulled her off the meds, but after 10 years, her body was utterly dependent. Everything began to shut down...even after she requested to be put back on the MS meds, and was refused...seems insurance wouldn't cover, and doctor's wouldn't prescribe meds to a non-existant condition.

She spent all last year in hospitals, wasting away...being turfed to four or five different places, each putting her on some other protocol. She couldn't eat, couldn't sleep, couldn't walk, couldn't talk...

She died a few months ago.

I'm hoping that MS research and knowledge has improved to the point that some doctor doesn't jump to that conclusion again with someone like my aunt. Nice lady...didn't deserve what happened to her.

My point, to the original poster: Have your friend get a 3rd, 4th, and 9th opinion.
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Old 08-29-07, 01:39 PM   #10
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My Grandma's sister had MS. She was diagnosed with it when she was like 20 years old and the doctors told her she wouldn't live past 30, and she lived to 30; they told her she would never have kids, she had 5. When she was in her 50s the muscles in her throat were so weak that food got into her lungs and she got such a bad infection that it almost killed her, and they told her she could never eat or drink anything for the rest of her life. She lived to her mid 70s, never had any food or water for over 20 years, only small ice shavings when her mouth got dry. Cancer finally got her, and when ever I saw her she looked so frail, but the MS never really seemed to get her down.

MS can be very treatable, or it can be very progressive; making people go from perfectly healthy to a wheelchair in just a few years. You should talk to your friend more if you are worried about him and see what his doctors have to say.

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Old 08-29-07, 01:41 PM   #11
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Not a very funny story, Mo'. Sorry to hear that. ((hugs))

But I agree. Neurological diseases are very hard to pin down sometimes. It's well-worth it to seek out a second and third opinion, preferably going to docs #2 and #3 as though you have yet seen no one for this condition.

In any case, the more knowledge you have, the better. Seek out reputable sources of information, and learn as much as possible. Then this makes it possible to have a dialogue with the examining physician, and to open up discussion that might not otherwise be considered by the doc in that moment.

/personal opinion
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Old 08-29-07, 03:33 PM   #12
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I've got personal experience as my mother was diagnosed when I was in 3rd grade (I'm 32 now). MS is a funny disease in that it hits different people in different ways. My mother got progressively worse, from just tingling in her feet and then legs to paralysis below the waste and complete loss of sight. She was flown to a hospital in Milwaukee where they did some (at the time) experimental treatment(s) to her and after a number of months in the hospital - she started regaining her sight and actually walked out of the hospital on her discharge day with the aid of a walker (all of 2-3 steps, it was a goal of hers). She spent the next few months in a wheel chair, graduated to a walker, then a cane, then to nothing. To this day, if you didn't know she has MS - you'd never guess.

Lasting effects she currently suffers from is she gets cold easily (supposedly opposite of many MS patients) but doesn't like extreme heat either, tires easily and will loose her balance from time to time. She also states that she has that 'leg is asleep pins and needles' feeling in her right leg and left foot 100% of the time.

Besides her, I have a good friend I work with that suffers from MS. He too was misdiagnosed a number of times until the final diagnoses was MS. The first two diagnoses were for terminal diseases so when they finally figured it out, he was like, "OH BOY, it's JUST MS!"

Also my wife has a cousin that has it and hasn't responded well to any treatment. It has really affected her personal life as she has become a recluse and avoids being around the public, friends and family. It is very sad.

I WILL say, if your friend has children that are old enough to understand - educate, educate, educate. I can't tell you how frightening it was before we knew what it was and even afterwards. I remember laying awake in bed, night after night, wondering if mommy was gonna die. Get your buddy (or get those closer in proximity to him) out and about, in social settings. Keep his spirit up. Send him motivational books on attitude and beating the odds (http://www.amazon.com/Its-Not-About-.../dp/0425179613). If he was a D1 athlete, he's motivated and a fighter. He CAN beat this, he just might need some reassurance from time to time. Be that guy for him!

Thoughts and prayers sent.

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Old 08-29-07, 03:39 PM   #13
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Wow... I have a good friend that has it but she has a "slight" case or early stage of MS. She gets a bit dizzy and sometimes her vision gets blurry. She didn't find out until a couple years ago after she fell down some stairs and cracked her neck. The doctors diagnosed her with MS that caused her dizziness and blurred vision to make her fall.

There's not a lot that can be done. She takes pills to help keep it in check as best as it can. But it's so unpredictable, the docs can't tell her whether it'll get better or worse over time. She can only hope and pray for the best.

I also have a business acquaintance who's mother has it bad. I don't know the major details but during Christmas his mother had a sever attack that almost killed her. It was very debilitating. She's okay now but the family is always on high alert because they never know when it'll hit and how bad it will be.

And as someone on the sidelines it's hard to watch and not be able to do anything to help. So we can just pray and hope for the best. BUt occassionally you hear good breakthroughs in MS research. Let's just hope a cure happens sooner rather than later!

My prayers go out to your friend and his family as well.
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Old 08-29-07, 03:48 PM   #14
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Thanks for all the personal stories, information, and support. This will certainly give a new reason to ride in my MS 150.
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Old 08-29-07, 09:44 PM   #15
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My mother has MS, she was diagnosed with it before me or my older sister were born. She has been living with it for about 40yrs now. I think the prognosis with the disease is better now than back then though it is still very unpredictable. For my mother it has been a long progression of disability that has never in my memory had any remission just the same constant symptoms with a gradual increase in severity. She has very poor motor control, her speech is impaired, and I suspect some cognitive impairment has creeped in over the last few years as well. My mother used to be able to walk around the house as long as she had was able to hang on to the wall or something she could use to balance her self, she only had to use a wheel chair in public spaces but now she must use one inside as well. Now even with assistance she is unable to really walk like she used to sometimes her legs just will not respond. She used to be nurse but had only worked for a few years before she had to quit, she is on full disability. Addmittedly my mother has been somewhat reclusive in terms of living life with her condition, though like many things in life it also come down the personality of the particular individual as to how they cope.

Frankly it can be a very devestating condition, but it is up to that person if they let the condition define them or if they define their life on their own terms in spite of the condition. Though things were tough at many times I think the fact that my mother was able to raise two children by herself with MS is a testament that one can still live life with hope.

I wish your friend the best and would definately encourage him to get several different medical opinions.

My sister was having some problems with tingling and numbness in her arm several years ago, well after going to several doctors and and seeing a neurologist they tell her that she has MS, knowing firsthand the potential implications of that diagnosis we were all needless to say very distraught. This neurologist had settled on the diagnosis of MS and then had the gaul to imply to my sister that she shouldn't have children (she was already married and looking soon at having kids at the time) and that she would be depressed and a horrible mother if she did. Well guess what? after going to another doctor for some back pain they found that she had a previously fractured vertabrae that was putting pressure on her nerves where the bundle branches off to the arm. Something so simple that the neurologist completely missed. The point being that for these kinds of big deal potentially life altering diagnosis and the resulting decisions one should never really on just one doctors opinion, get other opinions. Sometime if you go to a specialist, they just might diagnose you with something that falls in their speciallty even if thats not rely the true problem. I'm not saying it's intentional but doctors can and do make mistake just like everyone else. It's a good thing I don't know who that particular neurologist was by looks, cause if I saw her on fire I wouldn't piss on her to put her out.
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Old 08-29-07, 10:03 PM   #16
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Have hope. The research on MS is coming out fast, furious and very productive. The MS therapeutic vaccine is already in late stage trials. http://www.msrc.co.uk/index.cfm?fuse...ow&pageid=1313
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Old 08-29-07, 10:03 PM   #17
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JS, thanks for sharing that powerful story. An inspiring testament to the human spirit, and the love of a mother for her children. <wipin' tears from eyes> Glad things worked out well for your sister.
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