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Group admin:: Judi
Created:: March 8, 2008
: 47 Members

Group Tags:

health, body & mind, mental health, food, diet, weight loss, health care, holistic health

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Primary care giving for Multiple Sclerosis Q&A

Posted: Mar 8, 08 5:14pm

Multiple Sclerosis is a debilitating disease with no cure. It is often called the "silent or invisible disease". I am a primary care giver to my wife who has had the disease for 17 years. I am very well versed in the symptoms and therapy of the disease and an experienced care giver.

Please feel free to visit this discussion and ask questions about MS and care giving. I also have first had knowledge of Handicap Mobility challenges and solutions.

Regards .. BadFrog

March 12, 2008 .. subject matter contribution by my wife Yvonne.

What it is: a disease of the central nervous system (CNS)...the brain and spinal cord. They *think* that your immune system gets out of whack somehowand starts to attack the 'white matter' in the CNS. The white matter is called myelin...it functions like the insulation on an electrical cord...the insulation is damaged and the cord doesn't work right any more. MS is different for everyone...it depends on where in the CNS damage is done and how severe the damage is.

Cause: still unknown though there are many theories. They are exploring genetics, exposure to viruses or environmental contaminants, among many others.

Symptoms: a common early symptom is optic neuritis where you lose some of all of your vision in one or both eyes. This is usually temporary. Other symptoms run the gamut... numbness, tingling sensations, weakness, dizziness, severe fatigue, pain, and on and on.

Diagnosis: this is the tricky part...it is diagnosed by ruling other things out. An MRI,nerve tests and a spinal tap to check spinal fluid *may* be done...among other things.

Treatment: there is no known cure. In recent years drugs have become available that may slow down the damage that MS can do. They are Avonex, Betaseron, Copaxone and Rebif. Your doctor might also treat flare ups with oral or IV steroids. In addition there are lots of drugs available to treat the wide range of problems that MS can cause.

Things you can do:

1 - Find a good doctor! Ask questions if you don't understand. This relationship is extremely important! If your doctor doesn't have time for you, is not responsive to your needs, not willing to listen, etc., FIND ANOTHER DOCTOR!!!

2 - Insist on reliable information. There are a lot of quacks out there

selling snake oil...their own 'secret formula' to cure MS. A great place to begin your MS education is the National Multiple Sclerosis Society at:

http://www.nationalmssociety.org/index.aspx

NMSS has information specifically geared toward patients, newly diagnosed, caregivers, doctors, etc. There is even an 'online community' link with chat and message boards through their collaborative partner, MSWorld http://www.msworld.org , so you can communicate with others affected by MS.

Tags:

Multiple Sclerosis, MS, Primary care giver, caregiver, disease

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35 Comments // 12 Members

Judi

Posted: Mar 8, 08 7:08pm

BadFrog wrote:

Multiple Sclerosis is a debilitating disease with no cure. It is often called the "silent or invisible disease". I am a ...

Excellent choice, BadFrog, and thanks for starting us off on this new group. MS is a very progressively debilitating disease, and even though life expectancy can be quite long, the cost to the patient and family can be devastating. These costs include time, energy, emotions, financial, and . . . BF, why don't you fill in the blank and explain some of these losses & costs?

Also, give us a brief summary of what MS is and the primary symptoms.

Thanks,

Judi

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Just-a-Writer

Posted: Mar 9, 08 3:41am

BadFrog wrote:

Multiple Sclerosis is a debilitating disease with no cure. It is often called the "silent or invisible disease". I am a ...

Yes, BF, give more info please, because I for one have heard of it, but I've not had any experience with it and can't really say that I know anything about it at all.

A short tutorial would be an excellent way of starting the Q&A.

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BadFrog

Posted: Mar 9, 08 6:33am

Just-a-Writer wrote:

Yes, BF, give more info please, because I for one have heard of it, but I've not had any experience with it and can't re...

Judi and JaW's ..(couldn't resist that)

I will do my homework and edit/paste below my entry..above..a short tutorial.

That will leave the response area open for Q&A's

BadFRog

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Just-a-Writer

Posted: Mar 9, 08 6:57am

Just-a-Writer wrote:

Yes, BF, give more info please, because I for one have heard of it, but I've not had any experience with it and can't re...

Super kewl froggy dude! lol

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Greg_RW

Posted: Mar 9, 08 10:31am

BadFrog wrote:

Multiple Sclerosis is a debilitating disease with no cure. It is often called the "silent or invisible disease". I am a ...

BadFrog,

Nice topic, as my mother has Relapsing-Remitting and now Secondary-Progressive MS for ~30yrs. Until you post your reply, I've enclosed a couple of links that I think would be helpful and informative.

http://www.neurodiscovery.harvard.edu/ms.html

http://www.nationalmssociety.org/about-multiple-sclerosis/what-is-ms/index.aspx

Thx,

Greg

P.S. Judi a little help please... If we start talking about demyelination of the nerve sheaths is that too technical for this forum?

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Judi

Posted: Mar 9, 08 11:59am

Greg_RW wrote:

BadFrog,

Nice topic, as my mother has Relapsing-Remitting and now Secondary-Progressive MS for ~30yrs. Until you post...

Thank you, Greg, for the web sites. Greg is a pharmacist turned rocket scientist (or something like that) LOL Greg, you'll be of great assistance when we get to the medications involved.

Talking about demyelination is not too technical and is required if you're going to talk about MS in a way that explains the symptoms. Also, all members have access to dictionaries, encyclopedias, etc. on the internet if they want further clarification, or they may ask us. How about I start . . .

Demyelination is a degenerative process that erodes away the myelin sheath that normally protects nerve fibers. This then exposes these fibers and appears to cause problems in nerve impulse conduction that may affect many physical systems, resulting in the symptoms that MS patients suffer.

Take it away, BadFrog . . .symptoms, please.

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BadFrog

Posted: Mar 9, 08 2:03pm

Greg_RW wrote:

BadFrog,

Nice topic, as my mother has Relapsing-Remitting and now Secondary-Progressive MS for ~30yrs. Until you post...

Hi Greg ..thanks for comment. Although it can be very technical,"demyelination of the nerve sheaths", is a "key" factor in MS. For that matter, it is "MS in action".

So talk away !

Froggy

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