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Author Topic: Elliquiy's Multiple Sclerosis Society  (Read 315 times)

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Offline MayhymnTopic starter

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Elliquiy's Multiple Sclerosis Society
« on: December 10, 2012, 12:36:35 PM »
For those of you who don't know what MS really is:
MS is a Disease of the Immune System

MS is a disease that involves an immune system attack against the central nervous system (brain, spinal cord, and optic nerves). The disease is thought to be triggered in a genetically susceptible individual by a combination of one or more environmental factors. Although MS is thought by some scientists to be an autoimmine disease, others disagree strongly because the specific target of the immune attack in MS has not yet been identified. For this reason, MS is referred to as an immune-mediated disease.

As part of the immune attack on the central nervous system, myelin (the fatty substance that surrounds and protects the nerve fibers in the central nervous system) is damaged, as well as the nerve fibers themselves. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.

Most people with MS learn to cope with the disease and continue to lead satisfying, productive lives.

The Four Courses of MS

People with MS can typically experience one of four disease courses, each of which might be mild, moderate, or severe.

Relapsing-Remitting MS
People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.
Primary-Progressive MS
This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. Approximately 10% of people are diagnosed with primary-progressive MS.
Secondary-Progressive MS
Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition.
Progressive-Relapsing MS
In this relatively rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.
Since no two people have exactly the same experience of MS, the disease course may look very different from one person to another. And, it may not always be clear to the physician—at least right away—which course a person is experiencing.

-National MS Society - http://www.nationalmssociety.org

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Re: Elliquiy's Multiple Sclerosis Society
« Reply #1 on: December 10, 2012, 12:44:52 PM »
Thank you for this. I have a dear cousin who was diagnosed with MS shortly before her 24th birthday. She is 32 now and her life is not noticeably impacted yet, thankfully. I'm grateful for modern advances in treatment, that give ordinary people much longer than the barely 17 years that Jacqueline Du Pre had.

Offline MayhymnTopic starter

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Re: Elliquiy's Multiple Sclerosis Society
« Reply #2 on: December 10, 2012, 12:51:45 PM »
I thought starting a MS Society/Group here on E would be a great idea. I did a search for multiple sclerosis in the search bar and saw that many people here have it, as well as myself. I created this forum to help and support each other, from question to answers, experiences or anything else, and even to bring awareness to those who don't really know what it is.

I remember the first time I got to speak with someone else who had what I had, just to know I wasn't alone dropped me in tears. I currently have Relapsing-Remitting MS and it seems somewhat stable, but we never know with MS what the day will bring.

I'm currently 31 and deal with MS everday. I've had it for three years now. My first attack being very sever, I lost my sight(double vision), cognitive thinking and speaking, and walking. I was diagnosed with ADEM(Acute disseminated encephalomyelitis) which is a close relative of MS, but usually in younger people like kids. I was remitted to the hospital 3 more times in the next few months, being treated with steroids each time and just sent home. How miserable, good news is though I was recovering the first attack remarkably. The only thing I have left from that is a numbness/dullness in the right side of my face, nothing nobody else could ever notice. So, glad to walk and talk, I have yet another attack and am sent back this time my spinal tap shows white blood cells, a pretty good notification that you may have MS. An MR later and I'm told I got more lesions on my brain and that they are diagnosing me with MS. I was put on Beta Serion 1b for almost two years and when Gilenya, the first pill for MS made it through FDA I put out an application through my MS specialist and was changing my medication a few months later. I love Gilenya and would never go back to needles. I really try to stay positive about everything but I do deal with many symptoms from day to day.

I could go on. I'd like to connect with others who have MS and hear your stories and shared experiences.

Thanks!
Gail

Offline MayhymnTopic starter

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Re: Elliquiy's Multiple Sclerosis Society
« Reply #3 on: December 10, 2012, 06:16:17 PM »
Thank you for this. I have a dear cousin who was diagnosed with MS shortly before her 24th birthday. She is 32 now and her life is not noticeably impacted yet, thankfully. I'm grateful for modern advances in treatment, that give ordinary people much longer than the barely 17 years that Jacqueline Du Pre had.

Yes, what a horrible thing to happen. The advances in the study have gone so far in the last 20 years or so. I'm so grateful it all, but mostly to be alive and for the first MS pill, sticking myself with needles everyday was becoming so hard to do. I hope your cousin gets to live a long and fulfilled life.

Offline Pumpkin Seeds

Re: Elliquiy's Multiple Sclerosis Society
« Reply #4 on: December 10, 2012, 06:32:15 PM »
My mother has this disease.  She used to be quite the athlete.  When she was growing up girls didn’t play a lot of the sports she played.  Tennis, skating, basketball and even touch football were all things she enjoyed.  She used to race cars out in city park and supposedly had a mustang with a modified engine.  That was how she meet my father when he pulled her over for speeding.  She used to scuba dive and snorkel out in the Caribbean every summer.  She really was a woman that enjoyed every moment of life.

She has relapsing-remitting MS.  The progression is slow but I think falling from such a great height did more damage than the disease.  Giving up is the worst mistake she made when fighting her illness and she has rapidly declined.  When I was little she still had that spark of life to her, but she just couldn’t keep the fire going.  Now she just seems to be waiting for everything to be over with and tells me how she feels trapped in her own body. 

To those suffering from this disease I really wish them all the best I can.  I’d beg them to keep up fighting because that really does make a difference for bot themselves and their families.  A lot of good memories were taken from my brother and I by this disease.  I don’t blame her, but sometimes it’s hard to look at her and not feel that twinge of “what if” and become angry.

Offline MayhymnTopic starter

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Re: Elliquiy's Multiple Sclerosis Society
« Reply #5 on: December 11, 2012, 04:09:35 PM »
Pumpkin Seeds I'm really sorry to hear about your mother. It's crazy how easily a disease can change someone's life in so many different ways. It's quiet depressing to be told you have lesions growing on your brain and then that you have a life long disease. I hope she can put up a fight and make it worth it!! http://www.ehow.com/how_7574603_regenerate-myelin-sheath.html is a good read about how to help rebuild myelin through diet. My mother doesn't have MS right now but is very depressed and wants to give up, I people who feel stuck like your mom and others who are very depressed can find a spark to live for, and some sort of upliftment in their lives.

With all the new technology and research, I have hope there will be a cure for those who are even badly damaged by the disease. They are working now with technology which would regrow myelin.  I love all the research and reading about it. Today this was posted. http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=7188
$25 Million in New Research Projects Launched to Stop MS, Restore Function, and End It Forever :)

Offline Black Hand

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Re: Elliquiy's Multiple Sclerosis Society
« Reply #6 on: December 13, 2012, 04:45:07 PM »
My mother also suffers from MS. When I was growing up she was fit and much happier, but after she got so much of life has beome a struggle for her. She loves to paint, but as the years have gone on it's been getting much more difficult for her. Thank you so much for putting this up.

Offline MayhymnTopic starter

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Re: Elliquiy's Multiple Sclerosis Society
« Reply #7 on: December 13, 2012, 06:46:27 PM »
It's definitely hard to deal with and I believe a lot of people much like myself with other diseases even feel alone. We're not though and the research being dumped into such diseases is growing at a higher rate then ever, even as technology increases. They are working now on stemcell research, which would help people who have been damaged by MS, Strokes and other causes, to get better. Nothing is approved by FDA but I honestly think in this generation is lucky to have what they have.

I know there's others here on this site that have it because I did a word search for Multiple Sclerosis, just hoping some of them find their way here. I do love the fact that some of you who have been effected by MS made a point to stop by though. I can't imagine watching it happen to someone else and not being able to do much about it. You're not alone either though. It was definitely something I never thought would happen to me and it has significantly changed my life in so many ways both good and bad.

Black Hand I hope your mother finds something to help her push on and paint about, and/or some other means to do so. It may sound silly, but perhaps a Windows 8 Surface or something like that... where she could express herself through just touch? Just an idea. I do wish you both the most of luck and good health all around.