What can you tell me about MS?

[Justin Beck]

My sister was just diagnosed with Multiple Sclerosis and I am trying to learn what that will mean for her. Any insight would be greatly appreciated.

Best,
Justin

[geeza]

It would be helpful if you asked specific questions. MS is too broad to just ask about generalities, because it presents differently for everybody.
I was diagnosed in 93, so ask away.
Also, Google MS and look into what it is and what it does. For the most part, not too much will change for her, and she will only be affected as much as she lets it affect her.

[Jim Campbell]

Originally Posted by Justin Beck

My sister was just diagnosed with Multiple Sclerosis and I am trying to learn what that will mean for her. Any insight would be greatly appreciated.

Best,
Justin

much is being done,research wise and often i hear the foundation saying they are very close....stem cell research,i believe.....

it affects people differently.....i had a girlfriend back in the 70's who was fine for a few years except for some vision problems but it eventually relapsed and she ended up spending most of her adult life in hospital....others i have known were able to function better.....write to the canook ms society.....they may be able to provide the info you need

[cdef]

Originally Posted by Jim Campbell

much is being done,research wise and often i hear the foundation saying they are very close....stem cell research,i believe... ...

Dr Paolo Zamboni of the University of Ferrara, Italy, has done research that preliminarily suggests MS might in fact be a treatable vascular disease, not an autoimmune condition as hitherto believed. If so, it stands the field on its head, but many more studies are needed to corroborate these findings.

http://www.nationalpost.com/news/story.html?id=2475272

[Mark Wilson]

I'm playing a fundraiser for MS next week, and honestly, I don't know anything about MS.

I'd like to know more.

[rosanne]

Our drummer was diagnosed with MS last fall. Sometimes he has flare ups and can't play. Sometimes he's fine. When it gets bad he has as hard time walking. However, I have a friend who has had it for as long as I've known her (about 10 years) and generally speaking she is doing fine even though it occasionally limits her activity a little.

Like others have said here, it's best to educate yourself regarding MS by Google-ing it, contacting societies, speaking to her doctor etc.

[MakiSupaStar]

As far as I know, it's kind of a catch-all diagnosis for an array of symptoms that appear to be unrelated. MS tends to affect everyone differently.

[CapnSev]

Originally Posted by MakiSupaStar

As far as I know, it's kind of a catch-all diagnosis for an array of symptoms that appear to be unrelated. MS tends to affect everyone differently.

This is about all I know too.

I do know that the MS society is always calling me for donations ever since I did a charity bike ride of theirs.

[MiniMoose234]

My mom has it, shes had it for a while, but no one diagnosed the symptoms as MS till a few years ago, and they did tests and it did turn out to be MS. One of the common symptoms seems to be walking problems, like with my mom. She also has recently been having more memory troubles...
Ive seen people that have it and are doing amazing. Almost no problem. Others end up in wheel chairs and it really destroys their life. My mom has to give herself/have my dad help giv her shots 3 times a week, which according to her are really bad. She hates it.

My dads been in the hospital 3 days now, with problems they just guessed on (inner ear inflamation causes super high blood pressure spikes and low heartreate? 0.0) and my mom has a slowly debilitating disease. My dads 65 and moms 52. Im 15. To be completly honest, im worried

[geeza]

Originally Posted by MakiSupaStar

As far as I know, it's kind of a catch-all diagnosis for an array of symptoms that appear to be unrelated. MS tends to affect everyone differently.

You may be thinking of something like Fibromyalgia. MS is a disease where the body's immune system goes haywire, and attacks the myelin sheaths around the nerves in the brain, causing them to "short circuit." This is why everybody is different - it depends where in the brain the resulting plaques (as they're called) occur, resulting in many different symptoms with differing severity.

Originally Posted by MiniMoose234

My mom has to give herself/have my dad help giv her shots 3 times a week, which according to her are really bad. She hates it.

I was doing the same thing (thank God my wife's a nurse). They weren't working for me. I'm now on Tysabri. It's a once a month IV infusion. It's working really well for me.

[jazzbo]

MS is a neurological disorder. Brain cells are called neurons. Neurons work by way of a electro-chemical reaction. Neurons are responsible for brain functioning. Neurons communicate with one another as networks. The process of how a neuron works is, of course, incredibly complex. To break it down more simply, neurons send information to one another in networks. The electrical impulse of a neuron is aided by a layer of fatty tissue known as the myelin sheath. The unique structure of myelin sheath in humans is part of what makes us, us. It allows for a quicker "transmission" of processes through a neuron, which help enable our cognitive and motor functions.

.

In multiple sclerosis, myelin sheath is destroyed, possibly due autoimmune reasons. (See cdef's post above). This is a process called demyelination. This results in a breakdown of intercell communication.

There are basically two types of MS: 1) relapsing-remitting, and 2) chronic-progressive. In relapsing-remitting, individuals can experience acute "attacks," which are followed by symptom-free periods (remission). (Each attack creates a new "baseline," and it is difficult, if not impossible, to return to past a previous baseline).



Symptoms include problems in vision, motor functions, cognition, and more. MS can be associated with psychological issues like depression and/or anxiety.

The course of the illness is unique and individual. It is not a fatal disease, in and of itself. People live with the disorder for an average of 30 years or so; however, these varies widely based upon a number of factors, including age of onset, gender, subtype, etc.

There is no cure; however, there are medications to manage and prevent attacks, and enhance lifestyle.

As Geeza pointed out, this is very general information. Also, there is a lot of new research being done on MS. I specialize in neuropsychology (pre-licensed), but MS is not my main area of study, so take the information that I have written with a grain of salt, and speak with a neurologist (and better informed people here) for more up-to-date and accurate information.

Also, what specific questions do you have?

[sleepy_monkey]

My aunt has an advanced case of MS. She has had it for about 20+ years and she is completely confined to a wheelchair. Honestly I don't think I have ever seen her walk in my lifetime (I am 28). She doesn't have use of one of her arms.

But it affects different people in different ways, so hopefully your sister will not be an extreme case. Montel Williams has had it for quite some time and still seems to function fine.

He is an advocate for medicinal marijuana as a result of his MS.

[sublimestylee]

I just participated in an MS walk that was in Seattle last sunday. There was about 4,000 people there, and we raised 1.8 million dollars for research!

[Justin Beck]

Thanks for all of the info guys.

My sister's has manifested in loss of feeling and control in her right leg, at first, and now has spread to her right arm and sometimes it even affects the right side of her face, causing slurring of speech. She is 25. She said it is really uncomfortable.

I am looking for information on treatment and how it will effect her. She is going to the neurologist tomorrow morning to get some more information. We are not sure if hers is the burst type or the chronic progressive type.

I really had no idea what it was until I googled it last night.

Thanks again all of you. This place is really amazing.

Best,
Justin

[rosanne]

Originally Posted by jazzbo

Also, what specific questions do you have?

I have a question.

Our drummer came to band practice today in a much worse condition (he has MS). He was late b/c he didn't remember how to get there. He says he no longer knows what numbers mean, so is unable now to work at his job. He is worried that this will lead to dementia. Is that true?

[jazzbo]

Originally Posted by Justin Beck

My sister's has manifested in loss of feeling and control in her right leg, at first, and now has spread to her right arm and sometimes it even affects the right side of her face, causing slurring of speech. She is 25. She said it is really uncomfortable.

Women generally have a better prognosis. Also, the age of onset/early diagnosis is another positive indicator.

It's sad to hear about her struggles. I'm sure it is incredibly uncomfortable for her, and possibly confusing and likely stressful. I would recommend that she see a psychotherapist to help with the emotional difficulties of her diagnosis. A good psychodynamic therapist can be helpful. She may also want to look into Acceptance and Commitment Therapy as a supplemental therapy.

I am looking for information on treatment and how it will effect her. She is going to the neurologist tomorrow morning to get some more information. We are not sure if hers is the burst type or the chronic progressive type.

Betaseron, (interferon beta), and/or corticosteroids are the most likely treatments she will receive from a neurologist. Common side effects of Betaseron include insomnia, muscle pain and achiness, headaches, and more.

I would also recommend that she see an alternative medicine practitioner as well, (e.g., traditional Chinese medicine doctor, naturopath, nutritionist, etc.). Acupuncture and herbal regimines can be effective, (but only as prescribed by a trad Chinese medicine practitioner, not self-prescribed). Nutrition, diet, excercise, stress, and anxiety are factors at play as well. While none of these treatment methods are going to cure MS, they will help to create an enhanced life, reduce discomfort, and possibly help prognosis.

I wish the best for your sister. Prognoses really do vary, and there's no reason to assume that she can't live a happy and productive life for many, many decades.

[jazzbo]

Originally Posted by rosanne

I have a question.

Our drummer came to band practice today in a much worse condition (he has MS). He was late b/c he didn't remember how to get there. He says he no longer knows what numbers mean, so is unable now to work at his job. He is worried that this will lead to dementia. Is that true?

Among other things, MS can affect cognitive functioning. Problems can develop in any area of cognition; visuo-spatial recognition, working memory, executive functioning, etc. Any of these things can lead to problems in navigation. Cognitive difficulties could also include acalculia or other problems with numbers.

These symptoms do not necessarily lead to dementia. MS can develop into dementia, but generally doesn't until very late in life (and the disorder).

I hope your drummer is feeling better.

**Also, I am NOT a neurologist and am NOT an expert on MS. I am a PRE-LICENSED clinical psychologist with specialities in neuropsychology and psychoanalysis. I would imagine that there are MS support groups out there, which could be extremely helpful and beneficial, and I would recommend confirming information from a neurologist. Also, for alternative medicine specialists, I would ask them about their experience with neurological disorders. While some may have the experience to treat, others may need to refer you to a neurology-specializing practitioner.**

[Jay Ralston]

My Dad was diagnosed with MS sometime in the late 80's. He was drafted to go to war in Vietnam and was sprayed with Agent Orange and contacted it as a result. Really, the disease effects every person differently so it is hard to say. The best advice I can give though would be to eat nothing but healthy food, avoid extreme heat, and try natural remedies instead of the drugs the doctors will want to prescribe. The only thing I have seen the prescribed drugs do is make the body worse or effect other parts of the body that are healthy but then they weaken and the body either has a harder time recovering or does not recover at all.

[bongomania]

A close member of my family has MS, the relapsing-remitting kind. She doesn't like people to know about it unless they are good friends, because she thinks people will treat her differently and even look down on her if they think she has a chronic disease (and in some cases she's right). Also one of her legs is very weak and has difficulty walking, causing her to have an awkward "gait"; she's very sensitive about the way that makes her look to others. She is afraid it makes her look like a shambling Quasimodo, even though that is far from the reality. Also, she used to be a competitive runner, rollerblader, and skier. Not anymore--and this has been very depressing. In addition to the weak and unresponsive leg, her eyesight goes weak sometimes, and she has to search for words sometimes.

Some people have found that raw coconut oil, taken daily as a supplement (in addition to their prescribed medication), improves their symptoms. I'm not a doctor of any kind, and I don't assert anything beyond that some people get good results from it--though it may be placebo, who knows.

[Jools4001]

My wife was diagnosed with MS around 4 years ago and she is now in what they call the Secondary Progressive stage of the disease.

Jazzbo's posts gave a pretty good breakdown of what's going on from a medical perspective. To put it in simple terms.

During an MS attack, or episode, the Myelin insulation around the nerve (or nerves) is being attacked and broken down - with a considerable degree of inflammation around the nerve. Although there is a body of research about why this happens nobody yet has a definitive reason, indeed there may be more than one cause.

Whatever the cause of the attack, during these episodes, the nerve effectively 'shorts out' at the point that it's insulation is weakened, or missing, and any nervous function downstream of that 'short' is impaired - consequently, there will be a corresponding impairment in the muscle groups and/or the sensory input back to the brain that these nerves control.

The degree of that impairment will depend on the severity of the attack and the degree to which the Myelin sheath is damaged. The exact nerves that are attacked, and to what degree they are damaged is completely random.

After the initial attack and inflammation is over (most usually controlled with Steroids), the myelin sheath will repair itself just like any other healing process in the body. However, it will not repair itself completely and there will be permanent scar tissue or plaques (Sclerosis). The nerve will regain much of it's original function, but it will not regain 100%. The amount of scar tissue and the degree to which that scar tissue permanently impairs the nerve function is also random (although clearly linked to the severity of the original damage). Clearly, since this damage is permanent, further attacks will be cumulative and result in more and more permanent scar tissue - hence Multiple Sclerosis

A further factor in the degree of recovery that the MS sufferer can experience is that the Central Nervous System is a network. If some bodily impairment is introduced after an attack, it is sometimes possible for the brain to map new neural pathways to enable sufferers to recover some of that bodily function - again, the degree to which this can be expected to happen is completely random.

The timing of these MS attacks is also sporadic. Sometimes, like buses, you can go for ages without one, then several come along in quick succession.

So, to recap, the fact that MS can attack random nerves, with random severity, at random times, with a random degree of recovery and a random rate of recovery explains why some people can go for years of relative normality and relatively few symptoms and some people go downhill quite quickly.