Multiple Sclerosis

[iloveboxcars]

this thread is for my friend Elizabeth who woke up last night unable to move or speak. after awhile she was able to do simple movements and called 911. they believe its MS but aren't sure, she showed no prior symptoms. at first they thought it was a stroke.

Multiple Sclerosis (MS) is an inflammatory disease of the Central Nervous System (CNS) - that's the brain and spinal cord. Predominantly, it is a disease of the "white matter" tissue. The white matter is made up of nerve fibres which are responsible for transmitting communication signals both internally within the CNS and between the CNS and the nerves supplying rest of the body.

In people affected by MS, patches of damage called plaques or lesions appear in seemingly random areas of the CNS white matter. At the site of a lesion, a nerve insulating material, called myelin, is lost. I shall explain this process in more detail later. Clinically, MS is a hard condition to characterise because it is very unpredictable and variable. Depending on which areas of the CNS are affected and how badly they are damaged, the type and severity of symptoms can vary greatly.

No two people get MS in exactly the same way and the expression of each individual's disease is as unique as their fingerprints. However, the different courses of the disease, both within an individual and within the whole population, principally differ in their timing, location and severity. Underneath similar processes (including demyelination and sometimes other forms of nerve degeneration) are going on.

Although recent research indicates that the biochemical make-up of lesions may vary between different forms of the disease, this is not the reason why people with MS (PwMS) have such widely differing symptoms - it's because nerve damage to one site usually causes completely different symptoms than damage to another.

In general, people with MS can experience partial or complete loss of any function that is controlled by, or passes through, the brain or spinal cord.

"That's sounds terrible - doesn't almost everything go through the brain?"

Well yes, MS can be and often is a very serious disease but almost nobody loses function in all possible areas and some people are affected much worse than others. People with MS can experience any of the following problems either fully or partially - numbness, tingling, pins and needles, muscle weakness, muscle spasms, spasticity, cramps, pain, blindness, blurred or double vision, incontinence, urinary urgency or hesitancy, constipation, slurred speech, loss of sexual function, loss of balance, nausea, disabling fatigue, depression, short term memory problems, other forms of cognitive dysfunction, inability to swallow, inability to control breathing ... you name it.

"Crikey, it sounds devastating"

Yes, but don't forget that it is usually a slowly progressing disease and few people, if any, experience all the possible symptoms. Three quarters of people with MS don't need to use a wheelchair and those that do find that it gives them greater freedom to do the things they want. Many people will require a cane after a number of years of disease activity. Other people will have only very mild and occasional symptoms. Still others have been found to have had MS as a result of an autopsy even though they never presented with any clinical symptoms during their lives. A minority of people with MS die as an indirect result of the disease in its later stages. The majority of PwMS will lie somewhere between these extremes. Adjustments have to be made, but most people with MS can live fulfilled and active lives.

"Can you catch MS from someone with it?"

Absolutely not. Studies have been done on children adopted into families where one of the parents has MS and they have been found to have the same incidence of the disease as the background population [sadovnick, Ebers et al, 1999]. Other studies show that the number of husband-wife copresentations is almost exactly what you would expect for a non-contagious disease [Ebers, Sadovnick et al, 2000]. This is worth emphasising - you cannot catch MS from a person with the disease. Multiple sclerosis is not contagious nor infectious.

"Are their different types of MS?"

Yes, there are four main varieties as defined in an international survey of neurologists [Lubin and Reingold, 1996]. (All the graphs show level of disability over time - where two lines appear in the graph it denotes two possible courses of that form of MS.)

_____________________________________________________

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1. Relapsing/Remitting (RRMS):

This is characterised by relapses (also known as exacerbations) during which time new symptoms can appear and old ones resurface or worsen. The relapses are followed by periods of remission, during which time the person fully or partially recovers from the deficits acquired during the relapse. Relapses can last for days, weeks or months and recovery can be slow and gradual or almost instantaneous. The vast majority of people presenting with Multiple Sclerosis are first diagnosed with relapsing/remitting. This is typically when they are in their twenties or thirties, though diagnoses much earlier or later are known. Around twice as many women as men present with this variety.

2. Secondary Progressive (SPMS):

After a number of years many people who have had relapsing/remitting MS will pass into a secondary progressive phase of the disease. This is characterised by a gradual worsening of the disease between relapses. In the early phases of Secondary Progressive, the person may still experience a few relapses but after a while these merge into a general progression. People with secondary progressive may experience good and bad days or weeks, but, apart from some remission following relapsing episodes, no real recovery. After 10 years, 50% of people with relapsing/remitting MS will have developed secondary progressive [Weinshenker et al, 1989, Runmarker and Andersen, 1993, Minderhoud et al, 1988]. By 25 to 30 years, that figure will have risen to 90% [Ref].

3. Progressive Relapsing Multiple Sclerosis (PRMS):

This form of MS follows a progressive course from onset, punctuated by relapses. There is significant recovery immediately following a relapse but between relapses there is a gradual worsening of symptoms.

4. Primary Progressive (PPMS):

This type of MS is characterised by a gradual progression of the disease from its onset with no remissions at all. There may be periods of a leveling off of disease activity and, as with secondary progressive, there may be good and bad days or weeks. PPMS differs from Relapsing/Remitting and Secondary Progressive in that onset is typically in the late thirties or early forties, men are as likely women to develop it and initial disease activity is in the spinal cord and not in the brain. Primary Progressive MS often migrates into the brain, but is less likely to damage brain areas than relapsing/remitting or secondary progressive - for example, people with Primary Progressive are less likely to develop cognitive problems.

Other terms often used to describe forms of multiple sclerosis are:

Benign MS: This is a sub-group of relapsing/remitting. It is used to describe the disease in people who have had MS for fifteen or more years without picking up any serious and enduring disability. One of the neurologists that I saw put it at ten years. It's a bit of a false label really and people with benign MS are often reclassified as Secondary Progressive after a number of years [Hawkins and McDonnell, 1999].

Malignant MS: Also known as Marburg's Variant and Acute Multiple Sclerosis. This is a label given to forms of MS where the disease progresses very rapidly from onset leading to severe disability within a relatively short period of time. Fortunately, this form of MS is extremely rare.

Chronic Progressive MS: Primary Progressive and Secondary Progressive used to be lumped together as Chronic Progressive (CPMS) but this term is no longer officially recognised although you will still see it referred to now and then.

Transitional/Progressive MS: Another form of the disease which is sometimes referred to but not widely used, is Transitional/Progressive (TPMS). This is characterised by a progressive course beginning many years after an isolated bout.

Devic's Disease: Also known as Neuromyelitis Optica, Devic's disease is a related condition to multiple sclerosis that is characterised by an attack of Optic Neuritis in both eyes followed by severe inflammation of the spinal cord (Transverse Myelopathy).

Balo's concentric sclerosis: This is another very rare disease that resembles multiple sclerosis. Clinically, it is very hard to distinguish Balo's concentric sclerosis from MS but MRI scans show the lesions in Balo's to be concentric rings of intact myelin and demyelinated zones. It is more common in China and the Philippines than elsewhere.

i doubt any of you will read all if anywhere near most of this. i wanted to make a thread, i just didnt want it to be a "that sucks bro" thread. if you have stories about the disease affecting you or friends or someone who knows someone etc. tell the story. otherwise dont bother replying.

[GLIK$]

anyone who says "SMASH" like a fucking idiot gets banned.

[lord_casek]

sorry to ehar that about your friend. it does sound like a stroke.

\my little niece had multiple strokes in her sleep. was paralyzed for a little while.

fucking sucks to be in a body that breaks so easily.

 

my thoughts are with you and your friend, homie.

[madsencarl]

in my old school they had the MS READ-A-THON

it's where you get people to sponsor you to read books to help support people with ms.

 

did you guys have that?

[lord_casek]

never had that, but i donate when i see people collecting

for reputable charities (burn victims, children, etc)

[Pfffffffffft]

stuff like this just goes to show that you CAN have a life change in a flash.

 

i thought that MS was developed slowly over time.

i guess not...if she has it that (RRMS) would be were she is maybe?

 

sorry to hear it Box.

[lord_casek]

i just heard something about a week ago

about a new thc based drug that's approved for ms patients.

montel williams led the charge to get this shit through the FDA.

he's also a victim o fthis crazy disease and an advocate for medical marijuana.

the drug is supposed to alleviate alot fo the pain of ms.

[shai]

Sorry to hear about your friend....just be there for her, I guess that's about all you can do.

 

My friend's girlfriend got killed in a car wreck on Saturday. Also, three weeks ago, another friend of mine died from blood poisoning related to IV drug use....what's going on?

 

Guess it's just one of those times. Keep your head up.

[LIVERWURST*]

Someone close to me one day disappeared and my family all went looking for her. I found her making small circles on a basketball court in her roller blades, laughing hysterically. She was diagnosed with schizophrenia and bipolar shortly thereafter. It's weird because while the person isn't actually dead, the person you knew is gone...I won't be talking serious like this on the internet again for a while.

[Obvious]

my next door neighbor's daughter had MS when i was a kid. unfortunately she eventually passed away (rip). i don't think i ever really knew her. i think she was like in her 30's when she died.

 

and i think richard prior had that too. (rip)

[Obvious]

It's weird because while the person isn't actually dead' date=' the person you knew is gone...I won't be talking serious like this on the internet again for a while.[/quote']

 

yeah i agree i don't like talking about morbid topics like this that much.

[ClueTwo]

Wow..I didn't know that was something that could happen in your sleep. Boxcars, is this someone you knew from home or out here?

[brick top]

there was a buncha FUCK MS shows out here a while ago for a kids mother if im not mistaken, FUNdraisers!!

[Gat Bush]

my aunt has this wack degenerative disease that causes her to have a lot of tumors grow on her body.

her heart stopped and she is living off a machine, and cant really eat anything. it sucks because its only downhill from here, my grandad waas living off a machine and couldnt really eat anything right before he passed.

 

im visiting her today.

[26SidedCube]

That's messed up. Sorry man. I hope Elizabeth is okay.

[HydrogenPeroxide]

My mom had a disease related to MS where her movement and speech has been slowly degenerating for the past 15 years. She now has to use a walker to get around and sometimes will lose her balance out of nowhere. Its really weird because they can't diagnose something specific after all these years of testing.

Its come to a point where we all wish it was MS because then a proper course of treatment can begin rather than guessing what will work.

 

Tell Elizabeth to keep her head up.

[Mr.Maker]

iloveboxcars...

 

i appreciate you putting this info

on the forum..my mom was diagnosed

with MS about 5 years ago..to tell you

the truth i don't know much about it..

i try not to think about it much..:(

 

i hope all turns out well

[shitting]

Two of my siblings have mild MS.

[MAR]

Ok heres what you need to get to her asap.

 

National Institute of Health provides free medical treatment for people in thier research programs. Heres the link Click here.

 

My Father is in PM&R and has seen a far amount of MS patients in the past. I'll ask him if has any other suggestions.

 

Good Luck and don't sleep on the NIH link.

[iloveboxcars]

thanks mar.

[the.crooked]

a family friend of ours was misdiagnosed twice before they finally settled on MS, and that was just because the symptoms were closest to it. It's a hell of a thing. my mom and her sisters had to go over to her apartment twice and clean it up. im not talkin dust and mop, im talking serious health hazard type shit. its horrible the devistation that such a thing can bring to a person. she now lives with her sister in a another state.

 

they havent been able to treat her accurately for not actually knowing whats wrong. much like hydrogenperoxide was talkin bout.

 

boxcars- whatever you do, make sure she understands that she can use peoples help. pride can be a good thing, but not when it overcomes your ability to live comfortably...

 

 

good luck to her and you.

[Guest R@ndomH3ro]

anyone who says "SMASH" like a fucking idiot gets banned.

 

 

You think so lowly of us dont you?

[Tyler Durden]

My father has MS.

Watching a parent deteriorate over 16 years, from a completely active person into someone confined to a wheelchair who is really only able to talk and move their right hand has been the single most influential factor in the direction my personality and life has gone in. My father is still just as mentally strong as he was when I was young, I know that it is absolute torture to him to not be able to go and do things himself, but he tries to be as active in the MS community as possible with working with handicap advocacy groups. We've done alot of fundraising activities too in the past.

 

When I was 10, my father collapsed and couldnt move. I was the only one there and was the one that ran to get the ambulance for him. That was the day we found out it was MS.

If I've been able to take this much, theres nothing that can phase me ever again.

 

 

 

I'm sorry to hear about your friend. I can only hope that it turns out that she has some sort of lesser form of the disease or that some of the treatments we'd tried work for her.

[the.crooked]

edit for superfulous comment

[Mainter]

we have a 5k run to raise money for MS every year where i live and i have been doing it for about 3 years now its sad to see how bad this affects anyone of age/race/gender so i would like to say if you have something like this in your town join it or start one talk to your mayor whoever if not at least start a charity and give as much as you can afford hell even if you can only give a penny do it, all goes to research to find a cure.... it can happen to anyone at anytime

 

 

sorry to hear about your friend

[B_As_In_Bot]

anyone who says "SMASH"or "TRASH" like a fucking idiot gets banned.

You were half right w/ those words..Now your all the way legit..

http://www.montelms.org/

[iloveboxcars]

^i seriously hope you arent calling this girl trash right now.

[the.crooked]

gliks on it

[lord_casek]

yeah, that montelms should be helpful. i forgot to find his association last night when i responded.

 

there's lots of help and hope for your friend. like the other people said, encourage her to live the best way she can and accept any help that comes along.

[makeithappennn]

this is soo horrible how it can happen soo fast..I read this 10 hours ago and i couldnt stop thinking about it..I have lost people close to me but never by something like this..sorry to hear it boxcars.