What Is Multiple Sclerosis


I am sure most of you know that I have Multiple Sclerosis (MS). I was diagnosed when I was 15 or 16. I know that many people don’t know anything about MS so I am going to write a little bit about it in order to help raise awareness to the disease and to open peoples eyes to what this disease is.

  • Multiple Sclerosis is what they call an autoimmune disease. This means that the persons immune system for some reason decides it is going to attack some part of the body instead of only attacking viruses and things like that. In MS the immune system decides it is going to attack the nerves of the CNS (central nervous system). The CNS includes the brain and spinal cord. They are not sure what triggers the immune system to think that part of the body is a invader and needs to be attacked.
  • MS symptoms happen when the immune system attacks the myelin around the nerves. If you think of your nerves like a wire the myelin would be the protective covering around the wire. If the nerve underneath the myelin gets hurt that is what causes the symptoms and some times causes permanent disabilities.
  • The body tries to repair the damage that is done but it is never the same. Once the nerve is damaged it won’t ever function the same again.
  • There are a lot of different symptoms that go along with this disease. I am going to list some of the most common ones: Fatigue, problems with walking, numbness, tingling, slurred speech, tremors, stiffness, problems with vision, cognition, speech, and elimination. Every person with MS has different symptoms. Which makes some people wonder if everyone that has MS actually has the same disease or if it isn’t a few different diseases that just get grouped in with MS.
  • Anyone can get MS. Women are more likely to get it than men and so are people with a lighter pigmentation to there skin. So Montel Williams who has MS is a real rarity.
  • They think MS has a genetic link but they aren’t sure what it is. In my case there is no one in my family history of it.
  • You usually get diagnosed between the ages of 20-50. I was a rarity and was diagnosed at age 15 or 16. Although younger patients are now getting diagnosed because doctors are starting to look for it at a younger ages. I have noticed though that I have had lots of activity show up on scans but I haven’t had many flare ups that people could see. In fact if I didn’t tell you I had MS and what symptoms I do have you can’t tell I have it all.
  • MS is rarely fatal. Most of the time people with MS with get a common cold of the flu and that is what will end up taking their lives.
  • There are several treatments out there that each do things differently. I am on one called Tysabri and it is the most expensive and most dangerous of the drugs. All of the current MS treatments are expensive and it makes it hard for people who don’t have insurance or even with insurance to afford.
  • It has been shown that treating the disease helps to stop the progression of the disease but since all the treatments are so expensive there are many people who simply can’t afford to treat the disease.
  • There is always new treatments in the works and exciting things happening in research that hold so much hope for future generations. They came out last year with the first pill you can take once a day for treatment. Up until the pill came out all the treatments were either shots or an infusion.
  • There is currently no cure for MS.

I think I covered most of the major parts of the disease but if you have questions or want any more information please let a comment and I will answer your questions!

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MS Tuesday

I haven’t done a MS update in awhile so I figure now is a good time to catch everyone up on how I have been doing. I have an infusion this Friday and than a MRI on the 21st after work. In September of 2011 the company I work for switch insurance companies which means that I had to miss a infusion and I am still trying get to back to feeling great again. I am glad that the Tysabri does make me feel good once it gets built up in my system. I have been on Tysabri for about 3 years or so and for me that is huge. When I was younger I refused to stay on a treatment because all the medications that they had for MS then made me so sick.

Anyway I have been super tired and worn out. I know part of that is because I missed a month and another part of that is because of the stress of my day job. It has been 7 months since they let Misti go so it is busy for me and for some reason January has been crazy busy here and when it is like this by the time I get home from work all I want to do is sleep so I haven’t been able to keep up with designing let alone blogging. I am going to try and get all caught up on Friday while I am getting my infusion.

My hands are still numb all the time but I am starting to have times where I can’t hold on to anything because I can’t grip whatever I am trying to hold. My feet are also going numb on and off which makes walking hard and it is just annoying. Also at my last Doctors appointment she noticed that my balance has gotten bad and since then I have been paying attention to it and it is still bad but like all MS things it is hit or miss as to when it will happen.

That is all for now but I will update again after my doctors appointment at the end of this month. I hope everyone is having a great Tuesday!!

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MS Tuesday-75%

***This is was originally posted on October 12, 2010. I am going to be re-posting some of my MS posts because I have gotten so many new followers and I want to share them with my new readers.

I found a stat during invisible illness week that really shocked me but in the same sense it made total sense to me. It said that 75% of marriages where one person has a chronic illness end in divorce. I am shocked by this but I also know it is true because I am one of the 75%. When I worked at the nursing home I saw it all to often. Peoples spouses would leave them once they got sick. On the other had I also saw the husbands that stuck around. I was always in awe of the ones that stayed with there spouses.

It makes me sad that people are so shallow that they leave when things are going as they hoped. It hurts me because I was 100% honest with my husband before we got married and once he finally saw that I was sick he left a few months later. I would never leave someone because they are sick. I know there are a few good men out there who leave but more than not they walk away.

The reason I am not dating is because I don’t want to deal with another person getting scared and walking away. Since the MS is basically invisible well at least right now it is people can’t understand that I am sick. Once they do finally see that I am sick they leave because they “can’t” deal with it. I just irritates me that so many people are scared by something that affects me but I can’t change that about people. I know this post is all over the place but it was hard for me to organize my thoughts on this post.

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Thanksgiving & My Birthday

Thursday was Thanksgiving here in the US and that is always a super busy day for me as it is for tons of people. I helped my grandma and I also worked on designs most of the day. I want to redo both of my sites but I have no idea what I want to do with my sites. I also come up with great ideas for clients but I can never figure out what I am going to do with my own sites. Oh well I always figure it out in the end. We had my grandma’s family over and there was quite a few of them that showed up. I never did count but we had planned on 17 or so. Once that was over I just went to bed because I was exhausted and I didn’t even do much because the MS is kicking my butt lately.

My birthday was on Saturday and I didn’t do anything other than go to dinner with my grandparents and my brother. My birthday was uneventful this year and I am okay with that! I am not looking forward to Christmas for several reasons but the main one is because I am already so tired I don’t know where I am going to find the energy to do everything that goes on this time of year. I think I will just hide!

I hope everyone had a great weekend and if you are in the US I hope you had a Happy Thanksgiving!

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Writers Workshop- 22 Things I Have Done

Mama’s Losin’ ItThis week I chose to write about 1.) Last week we wrote about what we have never done…this week write a list of 22 things you HAVE done. (inspired by Sellabit Mom).

  1. Placed a child for adoption
  2. Got married
  3. Walked out of a job instead of turning in my two weeks notice
  4. Been to jail
  5. Lived in the dorms while I was in college
  6. Started my own business
  7. Been diagnosed with a chronic illness
  8. Graduated for high school
  9. Dropped out of college
  10. Bought a brand new car
  11. Tried to reunite with my mom but she has made it clear she wants nothing to do with me or my brother
  12. Decided that I am not dealing with crap from my family
  13. Cut out family members that like to cause drama
  14. Learned to design blogs
  15. Gone to Yellowstone more times than I can count
  16. I worked at a nursing home and ended up loving every minute of it
  17. I got two cats to replace the little girl I placed for adoption
  18. I didn’t drink alcohol until I was 22
  19. I have never learned to drive a manual transmission
  20. Said no
  21. Peed my pants
  22. Wrecked my car because I wasn’t paying attention

It has taken me most of the day to come up with 22 things because I was trying not to post things that most people already know about me.

What things have you done?

Multiple Sclerosis Update

It has been a long time since I have written a post about Multiple Sclerosis and I really want to keep everyone in loop on what is going on with my health and all that fun stuff. Most of you know that I have an infusion once a month for my MS treatment. I take a medication that is called Tysabri. It is super expensive and can be dangerous but that is going to be another post. I was supposed to receive my infusion on the 23rd of September. That didn’t end up happening because the company I work for changed health insurance companies and I had to wait for a preauthorization to come through before I could get my treatment. So I show up on the 23rd and they send me home because of the whole insurance issue. For those that know a little bit about my job and what has been happening the the last 4 months or so you know that I can only take one day off a month because they have no one to cover the phones since they let go Misti who used to be my boss. So I knew I was going to have to wait a few weeks before I could take time off to go in and get the treatment once they got the approval that they needed.

My next infusion is on the 21st of October, which means that I have missed a whole month. Let me just tell everyone I have no idea how I used to live like this because I feel like crap. I always knew Tysabri was helping but I had no idea that it was helping so much. For the last 6 months or so I have had headaches and I also haven’t been in pain. Well since missing one month I hurt I have headaches and am exhausted. I literally slept almost all of Saturday because I was so exhausted from a normal week of work. I had to call my doctor and have her call in more pain pills because I was out and hadn’t need them so I didn’t bother getting a refill when I saw her last time. I feel so bad for people with MS that fill like this all the time. I am so glad that I have found an MS treatment that works for me and allows me to be a somewhat normal 26 year old. Also my hands are super numb right now and I am not sure if that is because I missed my treatment or just how the disease is acting right now.

I can’t remember if I wrote about my last MRI and doctor’s appointment so I am going to do a quick recap of all that information. I had my latest MRI in August and also saw the doctor after the results came in. According to the scan I am still stable and have been for about 2 years or so. They haven’t scanned my neck in a few years so when I go for my next MRI in February they are going to scan my brain and neck areas which means that it will be a super long and super expensive scan. I am interested to see if there have been any changes in the neck area. If there hasn’t been any changes that means I have been stable but if there are charges that means that I really haven’t been stable all this time. I hate the not knowing that goes along with having MS.

That is all there is for now. If anyone has any questions please leave them in the comments and I will answer them for you.
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Latest MRI

Last Thursday I had my latest MRI.  I get one every 6 months because of the Tysabri.  Lets just say that I know why they do it but it is a waste of time and money.  I could see if you where having problems but I haven’t been having any problems so it is just a waste.  Anyways lets to get back to the topic at hand.  I had it done Thursday and went to the doctor on Monday morning to get the results and see my neurologist.  We according the MRI it shows that I don’t have any new lesions on my brain but I am having more issues with balance lately.  Since we weren’t sure what is causing the balance issues she is having me get my necked scanned along with my brain the next time.  I hate MRI’s and adding the neck will just make it even longer!!!  It is so hard to stay still for that long.  My back ends up killing me and I always move a ton when they are doing the neck so they have to keep rescanning the same area.  Oh well it has to be done!

That is all I having going on right now.  I hope that everyone is having a good week!!!!!

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MS Tuesday-MS Videos

This week I am just going to post these two videos that were made by the MS Society about the causes of MS.  I hope you enjoy these videos.  If you have any questions please leave them for me!  As always I am looking for topics.  If you have one please leave it in the comments!


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A Great MS Advocate & Blog Writer

I am not sure when I first found Stuarts blog and website but I get most of the ideas for my MS Post from him.  I wanted to give all the other MS patients out there the link to both of his sites and information about him.  I re-posted this from his website with his permission.

About Stuart Schlossman    -  Updated   12.16.09

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MS Patient, Writer, Blog writer, Editor of Stu’s Views and MS Related News and Founder of the ‘MS Views and News’ organization
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My name is Stuart Schlossman and I Have MS. Relapse Remitting to be more specific.
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I live just outside of Fort Lauderdale, Florida. I have been married since 1988 to Patrice, and have two grown daughters and three grandchildren. When I am not resting I have three dogs that keep me busy and I volunteer as a co-facilitator for the National MS Society, as well as for MS Views and News.
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I was diagnosed with relapse-remitting MS in December 1998 after several years of symptoms including headaches, blurred vision, fatigue, vertigo, carpal tunnel syndrome, Bell’s Palsy and leg stiffness.
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Having gone through the process of checking for a brain tumor or other severe problems, MS was finally diagnosed. Although I was relieved to learn that I didn’t have a tumor, I was still dumbfounded and was severely depressed for many weeks.
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After meeting other people with MS, I felt I had to help those whose symptoms were worse than my own. I don’t see MS as a disease – for me it is an illness, one that I had to do something about. I was once in denial and then realized that I was “chosen” to have this illness.  Chosen for the mouthpiece that I have and the desire to help others.
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I formed an independent support group but wanted to achieve more. I contacted the National MS Society and a year later became the Committee Chair of the South Florida, Coral Gables MS Walk event. Every year my MS Walk Team, Team Hot Shots, has raised lots of money over the years. It is great to know that a part of this money is being used to fund patient programs in the local area, and a percentage is also used to fund research. For me, the Walk is both therapeutic and empowering. After Chairing the Coral Gables walk for (5) years, I went on to chair the Ft. Lauderdale walk for a couple of years. Last year, was my last, in chairing walks as I have found that with the time that my body allows, I need to concentrate on what I do best.
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In 2003, with my cognitive functioning worsening, and fatigue becoming an even greater issue, I found it increasingly hard to concentrate and carry out my job as part-owner of a business and in April 2003 I stopped working. This wasn’t easy but it did mean I had time to help others with MS.
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In 2005, I decided that I would like to do more so I designed and helped to organize The MS Health Expo for the National MS Society’s chapter here in South Florida. This first event took place in January 2006 and has continued to help many affected by MS each year. Most beneficial is the panel of MS professionals that lead a Question and Answer (Q&A) session.
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I have co-facilitated a local MS support group since the early 2000′s. This support group has become more of an Education Program and continues to meet once a month. Guest speakers are invited to discuss the issues and topics faced by the members. Topics have included a wide range of needs by the MS patient.  For me, the group is about educating and empowering people with MS and their caregivers to make the most of their lives through better management of the illness. Each year, we have our holiday party and Santa (ahem) comes for a visit to put needed smiles upon those that attend this yearly function.
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Sorry to be jumping around with the context but  In approx 2005 - (my memory is horrible so I really do not know if 2004 or 2005 ), I began writing archiving information in a blog called Stu’s Views and MS Related News, which was later superseded by the current version, Stu’s Views & M.S. News.  It is the blog postings that provide most of the information found in each week’s e-Newsletter.
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Stu’s Views and MS Related News“, is an e-Newsletter that I began sending to just those involved with the support group in about 2001. Then more and more were learning of the information that I was sending each day and eventually I had to stop sending daily messages as the information just continued to surge (via my knowledge of the internet) and the amount of people asking to be registered climbed to such heights that it made it impossible to send the information daily. In approx 2005 I had to begin only sending the newsletter once per week as the information was clogging people’s inboxes as I was one of the few, sending MS related informational e-Newsletters as that time. Now there are many organizations doing the same thing and many have coined my phrase: “e-Newsletter”.
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Recently when looking at notes of mine so that I could write this profile, I noticed that back in 2007 when I was doing an interview for the MS International Federation (MSIF), I reported that 900 people were receiving my e-Newsletter.  However as of today’s writing (December 16, 2009), I can say that I am now sending this e-Newsletter to e-recipients in (58) countries and upwards of 6000 are reading it directly from me, each week.
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In approx 2008 I created my website, along with my brother who is the brain behind being a webmaster. It was first called MS Views and Related News, as was the original name of the organization that I founded. Last year though, with Board Approval, we shorted the name of the organization to MS Views and Newshttp://www.msviewsandnews.org).
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I and/or “MS Views and News”, can be found on Facebook, Twitter, Live Journal and Linked-In.
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Monthly, our site is viewed well in excess of 100,000 times by people from all over the globe. Oh yes, I do love the internet. My vision for this organization is for MS Views and News to globally raise the level of education and awareness to millions of people impacted by Multiple Sclerosis.
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I want to empower people with knowledge via my website, e-Newsletters, blog and by providing education programs that I know as a patient, is needed by my peers.
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For that which I have been doing, others are taking notice. Many large MS organizations, such as the National MS Society, The MS Foundation, The Heuga Ctr, (now known as Can Do MS) and others have asked and continue to ask me to post items to my blog with regards to their organizations or with regards to topic information that they want greater exposure. In reward I guess (best to say) some have done interviews of me, like the MSIF did in 2007 and the MSF has written of me a few times.
Most recently, the National MS Society added this to their website:  “Ex-Salesman Uses Net to Inform, Persuade” -  Posted in April 2009 to the National MS Society’s website.
Click here: http://www.nationalmssociety.org/online-community/personal-stories/stuart-schlossman/index.aspx
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At one time and not too long ago, I was still extremely active. But the disease has caused me to make major modifications to my lifestyle, which I am sure that many with Multiple Sclerosis can understand. My fatigue hits hard each day and then this seems to cause secondary symptoms such as vertigo, blurred vision or the annoying tingling. I live with headaches most days and otherwise have varying pains, including skeletal pain, cramps and spasticity. I cannot type for long as my fingers cramp or ache. I cannot sit for too long or my body stiffens. I cannot stand for long or walk too much because I lose balance. Fatigue strikes everyday. Usually at about the same time, but sometimes it fools me and arrives a little earlier or a little later, depending on my activities.
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Fortunately, I do what I do, from the privacy of my home office. I stop as often as needed to take breaks, take a nap, and read  or to just play with my dogs
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I have used many of the different MS medications and advocate their usage for all MS patients.
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What may good for one patient may not be for another. Hence the reason for different products such as Tylenol, Advil and Motrin. Same principal, behind this.  All who have Multiple Sclerosis should be using one of the FDA approved medication to delay progression of their disease.
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My current motto is: “Why Accept Disease Progression”?  Especially when there are so many choices, thanks to broadening MS research.
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I hope that one day there is a cure for all of us living with MS and then a way to be found to reverse whatever damage has been done to our bodies and minds by this illness.
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Dr. King once proclaimed “I have a dream”.
Well, Stuart also has a dream.  My dream is a world in which all men and women with MS can live independent of this disease (illness).
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The information found above was updated by me (Stuart Schlossman) on December 16, 2009
Since December 2009 - Our newsletter as of this mention (April 2010 ) is now being received in (72) countries

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Some Interessting Facts

This week for my MS post I am going to post some facts that I found about the disease.

Facts about Multiple Sclerosis

General Information about Multiple Sclerosis

  •  First Diagnosed in 1849
  • The earliest known description of a person with possible Multiple Sclerosis dates from 14th century Holland
  • Multiple Sclerosis is the most common progressive and disabling neurological condition in young adults
  • Approx 2.5 million people worldwide, have Multiple Sclerosis
  • Around 400,000 people in the United States have Multiple Sclerosis
  • In the UK, approx 70,000 people have the disease
  • Approx 50,000 people in Canada have Multiple Sclerosis
  • Scotland has the highest incidence of Multiple Sclerosis per head of population in the world
  • In Scotland, over 10,500 people have Multiple Sclerosis
  • No virus has ever been isolated as the cause of Multiple Sclerosis
  • Average age of clinical onset is 30 – 33 years of age
  • The average age of diagnosis is 37 years of age
  • The average time between clinical onset of MS and diagnosis by physicians is 4 - 5 years
  • 10% of cases are diagnosed after the age of fifty
  • In 1936, only 8% of patients were reported to survive beyond 20 years after onset of illness
  • In 1961, over 80% of Multiple Sclerosis patients were reported surviving to 20 years after onset of illness
  • 2002 – A patient with Multiple Sclerosis can expect to live to average population life-expectancy minus seven years (mean life expectancy - 7 years)
  • Multiple Sclerosis is five times more prevalent in temperate climates than in tropical climates
  • Multiple Sclerosis affects women much more frequently than men. Approx. 1.7 – 2:1 in the US and approx 3:2 in the UK
  • The ratio of white to non-white is approx 2:1
  • Gypsies and Inuit’s do get Multiple Sclerosis although the incidence rate is much lower than other populations at approx 19 per 100,000
  • Native Indians of North and South America, the Japanese and other Asian peoples have a very low incidence rate of Multiple Sclerosis
  • In identical twins where one twin develops the disease, the likelihood of the second twin developing Multiple Sclerosis is approx 30%
  • The incidence rate for non-identical twins, where one contracts Multiple Sclerosis, is approx 4%
  • The risk of contracting Multiple Sclerosis if a first-degree relative (father, mother, sibling) has the disease, is approx 1% - 3% overall
  • The risk of contracting Multiple Sclerosis if your father has the disease is approx 1 in 100
  • The risk of contracting Multiple Sclerosis if your mother has the disease is approx 1 in 50
  • The risk among the general population of contracting Multiple Sclerosis is approx 1 in 800

Sources:
http://www.themcfox.com/multiple-sclerosis/ms-facts/multiple-sclerosis-facts.htm

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