Multiple Sclerosis

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 News( http://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.
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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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Eating Health

This week I am going to write about eating healthy.  I realize now how important watching what you eat is.  Since I have be diagnosed I found out that I shouldn’t eat gluten.  I don’t think I have Celiac’s Disease but I know if I eat gluten I am going to get a headache and a few other symptoms.  I have noticed since I have cut out most of gluten in my life that the MS isn’t as bad.  Now this could be because of the medication I am on but I truly think that by cutting out the gluten my body isn’t as reactive as it was when it always had it in my system. 

The MS Society recommends a low fat high fiber diet.  They say that you should eat a diet low in saturated fats and use supplements of Omega 3 and Omega 6 oils.  I personally can’t start taking any of the fish oils so I used to take Flax pills instead.  I also read on another site where it says you should cut out all fried foods and refined sugar.  They also say that white meats and fish are the best kinds of meat to eat.  I personally am considering going back to being a vegetarian.  You need to also cut out any foods that you are allergic too. You should eat lots of vegetables and drink plenty of water. 

As I was researching for this post I realized that this “diet” isn’t any different than what every person should be doing regardless if they have MS or not.  I am going to try and follow what I have learned but I know it will be super hard for me.  I feel like I already cut so much out when I took out gluten and dairy that I am not let with many choices.  I know that I have to do this though so I am going to start working on it!

If you have any questions or have a topic that you would like to learn about please leave me a comment and let me know!  I am always looking for topics.

Sources:
http://www.nationalmssociety.org/living-with-multiple-sclerosis/healthy-living/nutirtion-and-diet/index.aspx
http://www.streetdirectory.com/travel_guide/152132/e_diet/tips_for_a_multiple_sclerosis_diet.html

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MS & Lyme

This week I am going to talk about how some people are misdiagnosed with MS when they actually have Lyme Disease.  I got the idea for this from a comment that was left on the MS a few weeks ago.  After I read the comment that she left I knew I had to find out more about this.  There is so many reports out about this subject but I have found they are hard to digest and get through.  I am going to post a summary of what I have found on the subject. (Please know that there are reports out there but they hard to understand and I am going to do my best to high light all the interesting things I am reading.  If I get some thing wrong please let me know so I can correct it!)

  • I read where it says that they patients are getting the diagnoses of “probably MS” and not an official diagnoses of MS.  While they are undergoing treatment for MS they aren’t seeing any improvement in their symptoms in fact they may be getting worse.
  • MS and Lyme Disease both attack the central nervous system and leave the same type of lesions on the nerves.
  • One site I read said that people that are treated with steroids may seem like they are getting better but they are actually just having the symptoms of the Lyme Disease masked by the steroids

That is all that I could find about it.  Most of what I could find was articles were patients stories.  I debated about posting the woman’s comment that left on my blog but I decided that I am going to.  If you are reading this and would like me to take it down I will just let me know!
I think that it is worth your while researching Lyme Disease thoroughly.
You will find the blood tests miss 50% of cases.
The MRI scan is the same for Lyme Disease as for MS.
There is research that shows that many patients with MS have a spirochetal infection- which Lyme Disease is.
Treatment for Lyme Disease is antibiotics long term.
Treatment for MS -Steroids is contra indicated for Lyme Disease because it allows the bacterial infection to progress whilst appearing to supress the symptoms.
Tom Grier a microbiologist wrote 4 excellent lectures found in the right hand column of my blog he was also diagnosed with MS and then found it was Lyme Disease and recovered on appropriate antibiotics.

Lyme Disease is an emerging illness and there is much controversy over it so don’t expect much guidance from your neurologist do your own research and good luck.

They do not yet know what causes MS they only assume it is auto immune whilst the controversy rages over Lyme Disease how many MS patients are being missed when just simple antibiotics can restore health.

I know that she says a lot of what I wrote over but she does have other information in there that I think is great as well.  This was one of the hardest MS posts I have written because it was hard to find documentation on this subject because Lyme Disease is a newer condition.  I hope it was somewhat helpful though!

Sources:
http://www.associatedcontent.com/article/15949/multiple_sclerosis_patients_should.html?cat=5
http://www.google.com/search?q=lyme+disease+and+MS&ie=utf-8&oe=utf-8&aq=t&client=firefox-a&rlz=1R1GGGL_en___US367

Jodi’s MS Story

Today’s post is written by a lady that found my blog this past week.  I asked her and see agreed that I could post her diagnoses story.  Her name is Jodi and she blogs at Jodi Bean’s Blog.  Please go and give her some comment love.
I am always looking for people who are willing to share their stories on my blog when it comes to MS.  If anyone reading would like to share their story with my readers feel free to email it to me at margaannemarie (at) yahoo (dot) com. 

On September 26, 2008 I was diagnosed with Multiple Sclerosis.  At times it feels like it was yesterday and at other times I find it hard to remember my life without MS.  MS has become such a huge part of my life, not just because of my health but because of my involvement with volunteering and fundraising for MS.  Often times I wonder why I got MS. . . the whole “why me” question.  I don’t really know for sure why me but I do believe there is a reason or a purpose so I just try to do all I can to make a difference while I am healthy enough to do so.


Margaret has asked me to share “my diagnosis story” with all of you so here goes!  On Thursday, September 25, 2008 I woke up to my alarm clock just like any other day.  But this day I noticed that my left food and leg were asleep.  I figured I had just slept on it weird so I dragged myself out of bed and got in the shower.  When the water hit me I realized that my left arm and side had that same feeling of “being asleep” or pins and needles.  I thought it was weird but didn’t pay much attention.  So I continued to get ready for work like any other day.  When I brushed my hair and my brush went down the back of my head and neck I had “that feeling” there too.  I thought, “Hmmmm what the heck is this all about.”  Off to work I went.  When I got to the office (at the adoption agency where I use to work) I told my two co-workers, Joana and Mary about my weird pins and needles on my left side.  I told them I had closed my ankle in the door the night before and thought maybe it was from that.  Or maybe it was a migraine?  Or a pinched nerve?  I decided to google my symptoms to see if I could figure it out and even read about some auto immune diseases including MS.  At this point I really wasn’t overly concerned but they were.  Joana really encouraged me to call my doctor so I did.  Or course the secretary told me he had no openings so I told her what was going on and ask her if he could call me.  A few minutes later the nurse called me back and asked me to come in later that day.  So home from work I went.  By the way I also had a cold and was exhausted.  I had mentioned to a few friends and my family that I wasn’t feeling well including my pins and needles.

I went to see my doctor that afternoon and told him what was going on.  He check me out both for my cold and for the pins and needles.  He did a full neurological exam but stated he wasn’t overly concerned because other than the pins and needles my exam was “normal.”  He decided to consult with a neurologist anyways who wanted me to come over and see him first thing the next day (it was already late afternoon at this point).  So that was that.  I went home and laid on my couch watching tv and being lazy.  I wasn’t feeling great due to the cold and by this time my whole left side was numb including my face.  I had also told a friend of a friend I would house and cat sit for several days and it started this night.  So I went over to their house to hang with the cat and sleep over.  The next morning, Friday, September 26, 2008 I went to St. Elizabeth’s Medical Center to see the neurologist.  We immediately hit it off because he asked me what I did for work and I told him I was an adoption social worker.  It turns out that he is an adoptive father so he starts telling me a little about that.  Then I tell him what has been going on and he does a full neurological exam.  He too states that he is not overly concerned because my exam was “normal” except for the numbness.  He talked to me about some things it could be from like stress, a virus or anxiety (I somewhat took offense to the anxiety comment since to me that meant “maybe this is all in your head” and I knew it wasn’t even though I didn’t think it was something serious).  Then he recommended that I have an MRI and blood work.  I remember him saying that it was probably nothing and it would likely go away and I would never know for sure what it was from.  I thought, “ok that makes sense – probably nothing.”  I went back to sit in the waiting room while he talked to his secretary to coordinate the MRI.  I called my mom (who was at work) to let her know what was going on and of course she was worried.  She and my dad wanted to come over.  I told her not to  because I was really tired and just wanted to go home and go to bed after the MRI.  She said ok (but she lied haha).  So the neurologist comes back and tells me to head down right then for the MRI because they had an opening.  He tells me that he is on call for the weekend and I can call him if I want to get “the results” but that it is “probably nothing.”


So I head down for the MRI and get registered.  Then I wait.  At this point I’m still not really nervous.  Both my doctor and neurologist have reassured me that it is probably nothing.  So I’m just wanting to get it over with so that I can go home and sleep.  I head in for the MRI and once in the tube I’m thinking, “well this isn’t an opportunity for a nap.”  The banging was rather annoying!  This was my first time having an MRI so I really didn’t know what to expect.  After a 1/2 hour they pulled me out to inject contrast and back in the tube I go for about another 20 minutes.  I finish up the MRI and go to the bathroom to get dressed.  When I come out the tech tells me that the neurologist was ready to see me in his office.  I told her that he told me I could just go home afterwards and she again tells me I need to go see him.  So I was thinking that he was just going to give me the results in person since it was before 5 PM and he was still there.  No big deal right?  At that same time my parents arrived at the hospital (of course they had hopped in the car as soon as I told my mom I was having the MRI).  So I told my mom that I had to go back up to see the doctor.  I found out later that she was freaking out but I was still ok.  I just remember saying to her “Why would I need to go back and see him.”  Denial is a wonderful thing I guess because I was still pretty calm.

So I walk off the elevator toward the secretary and she says, “Hi Jodi I’m just getting your admission paperwork ready.”  I say, “WHAT?”  She says, “Oh the doctor will be with you shortly have a seat in the waiting room.”  We go and sit in the waiting room and I say out loud, “Why would I need to be admitted to the hospital?  I’m fine.”  All while sitting in the waiting room of the MS Center surrounded by pamphlets.  I even get a phone call from my Aunt Cathy who was calling to check on me.  I told her what was going on and that the neurologist thought it was nothing but wanted me to have an MRI to rule out MS and blood work to rule out Lyme’s disease and other stuff.

A little while later, the secretary tells us that the neurologist in in the emergency room dealing with an emergency and that we should take a walk to the cafeteria.  So we do and I get a tea and we kill some time.  We head back and soon after the neurologist arrives and apologizes for keeping us waiting.  I sit down in his office and he says, “Well by now you know there was something on your MRI.”  And I’m thinking no not really, “What?”  He says, “You have MS.”  I remember being SHOCKED.  But I’m fine.  I’m healthy.  There is nothing wrong with me.  He continues to say, “I am going to admit you to the hospital for 5 days of infusions of steroids.  That will help the inflammation go down and hopefully get rid of your symptoms.”  I ask, “Can I go home first?  Can I work next week?”  Seriously I’m thinking about work when I’ve just been told I have MS.  What is wrong with me?  Haha!  So we ask questions, he tells us a lot of stuff, I cry a little and then we head downstairs to wait to be admitted.  Still in shock I call my roommate, Stephanie.  She asks how I’m doing and I remember telling her not good.  I told her that I had MS and I don’t think she really knew what to say.  Then I had to ask her if she could cat sit for me that night since I wasn’t going anywhere.  She was great and agreed to do that as well as pack a bag for my parents to pick up to bring over to the hospital.

So we wait and wait some more and finally I get up to my room.  I think it is like 6 PM by now.  My original appointment had been at 11 AM so it had already been a LONG day.  My parents leave together so that my dad could drive my car back to my house and so they could get some stuff for me.  The neurologist (who I guess at this point is now my neurologist since I’d be needing one) comes to see me.  It was so nice of him to come and visit with me on a Friday night to make sure all of my questions had been answered.  He talked more about adoption and he shared his daughter’s adoption story with me.  It was really nice because in that moment it made me feel more normal since adoption was what I did I could focus on that part of me instead of the new sick part of me.

My parents returned and my brother, Timmy also came to visit that night.  My mom had called my 3 brothers, grandparents, aunts and uncle.  Luckily are family is pretty small so she didn’t have too many people to call.  I couldn’t even begin to think about all the phone calls I needed to make.  Joana called me soon after as she was anxiously awaiting an update from me.  I had to tell her my news and she too was shocked.  I can’t really remember who else I told that night.  Strange since I remember the rest of the day in so much detail.  But the details of all those phone calls are a little blurry.  I do know I had to start my first treatment that night so they got me set up with an IV and started the steroids.  I was so exhausted by the time that was done and everyone left that I pretty much just went to bed.


I’m not going to get into all of the details of the next 5 long, boring days spent in the hospital because this post is already super long!  But to summarize I had a lot of visitors and felt so fortunate to have such a supportive family and friends.  I also got flowers, cards, candy, etc.  I guess all I had to do was get sick to be showered with attention and gifts.  Haha.  Finally on Tuesday afternoon I was allowed to go home.  Here I am right before leaving the hospital .  You would think I would look much happier to be going home (well to my parent’s home) but I always feel a little silly posing for pictures alone.


I stayed at my parents house through the weekend.  I was pretty exhausted from the ordeal so I didn’t do much of anything.  I pretty much rested and regrouped.  My grandparents sent me the above flowers once I was out of the hospital which was so nice!  My mom took me shopping too which was really nice but I was so tired I could hardly enjoy it.  I did get a few new things though.

The other great thing about being at my parent’s house (besides that fact that they took care of me) was that my niece, Peyton lives 5 minutes from them.  At the time of my diagnosis Peyton was exactly 9 months old.  So seeing her “walking” and getting kisses from her was the best medicine.  At this age she was pretty obsessed with shoes and really enjoyed the ones I was wearing.  I love looking back at these pictures and remember her at that age.  She was such a cutie!

So this is my diagnosis story.  There are chunks of details I left out because I was getting tired of typing.  But from many, many other MS’ers I’ve talked to I think my story is much different.  I was diagnosed VERY quickly.  I know many others aren’t that fortunate and for this I’m appreciative to my neurologist for sending me for that MRI.  I know he was pretty surprised along with my doctor!  I guess I’m full of surprises.

Once again I just want to thank my family and friends for their continued support during the last 2+ years.  Some days are easier than others but I’m so thankful to know I have so many people to lean on.  Without all of you this journey would not be easy.  Thank you so much for standing by me!

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