I intend this blog to be a mixture of my personal experiences with Multiple Sclerosis (MS) and news related to MS. Hopefully, I can shed an optimistic light on MS even though it is difficult to be an optimist living with MS.

Monday, January 31, 2011

Internet is Back Up

It is amazing how much we (or at least, I) rely on the internet.  My husband and I lost internet on Thursday and it was out all weekend.  Luckily our Blackberry's have internet; unfortunately, however, the Blackberry really isn't set up for internet usage the way I would like it to be.  While I can do some things on the internet on my phone, there are a number of things that I cannot do, like post on this blog.  That was frustrating because I had been doing so well about posting daily.  My perfect record has been lost, but that is alright.
I had quite a few things that I wanted to do over the weekend and then I realized that most of them required the internet in some way, shape or form.  How sad that I am so dependent on the internet.

Had a frustrating experience with my pharmacy today - I have not been very happy with them since switching over in November.  I don't really want to talk about it right now, but maybe tomorrow I will indulge you in the excitingly boring tale.

So, thanks to my sister, I have been reading a lot about Chronic cerebro-spinal venous insufficiency (CCSVI).  It is, essentially, the compromised flow of blood in the veins draining the central nervous system.  There is a controversial hypothesis that links CCSVI to MS.  A doctor in Italy claims that people with MS tend to also have an abnormality in blood drainage from the brain and spinal cord.  He suggests that a procedure that inserts a stent or balloon, widening the vein in the cervical spine region, is, in large part, a "cure" for MS.  There are some doctors in NY who are now offering this procedure and thousands of people have flocked to NY to get the procedure.  The outcome of the controversial procedure is touted as a "miracle" by some and a myth by others.  For more information, read these articles:
Studies and Background on CCSVI and Multiple Sclerosis
Studies in 2011 Could Decide MS Theory's Validity
From MS Patients, Outcry for Unproved Treatment 
Zivadinov proves Zamboni’s “CCSVI” does not exist 
Doctor Challenges Cause Of MS And Treatment 
UPDATE: CCSVI: Pursuing Promising Avenues in MS Treatment and Research

Let me know what you think and if you know of any other information available about CCSVI.  It sounds promising in some accounts and not-so-promising in others.  I am curious for my readers' input.  Hope you are well!

Sunday, January 30, 2011

Internet is Down

Our internet at home is down.  Someone is supposed to be coming by on Monday to fix it.  I probably won't be able to post again until the internet is back up and running.  Hope everyone is well!

Friday, January 28, 2011

One Resolution Gone Bad

Normally, I am not one for New Year's Resolutions.  I really can't remember the last time I made one until this year.  In all fairness, I am not sure I truly made any resolutions this year; it just so happened that I decided to make some changes and those changes began to be implemented around the first of the year.  Therefore, I consider myself to have four resolutions: 1) eat healthier, 2) become more involved with MS research, funding, advocacy, etc., 3) begin and keep up this blog, and 4) commit to a workout regimen.  Numbers one, two, and three have been going pretty well, but number four has gone awry.   

Number One:
Back in November, my husband and I started looking into the way diet can affect MS.  I looked into all of the "MS Diets" and eventually read that none of them are scientifically proven to help with MS.  Rather, they are just based on personal experiences.  I bought one "MS Diet" book that eliminated A LOT of foods.  I tried to begin that diet and ended up spending almost 2 hours at the grocery store reading labels and trying to find foods that were permitted.  It was a little ridiculous in my opinion, so I did some more research.  That is when I found that no diet is proven to help with symptoms.  I read a lot about limiting the intake of foods that cause inflammation (nerve damage in MS is caused by inflammation).  Also, I found some information on the National MS Society's website about nutrition and diet; it said, "There is some evidence that a diet low in saturated fats and supplemented by Omega 3 (from fatty fishes, cod-liver oil, or flaxseed oil) and Omega 6 (fatty acids from sunflower or safflower seed oil and possibly evening primrose oil) may have some benefit for people with MS."  Based on my research (and the fact that I didn't want to give up some of the foods eliminated in the "MS Diets"), I decided to start my own diet.  My diet does eliminate some foods due to their inflammation-causing attributes (such as red meat).  Furthermore, my diet is low in fat, eliminating saturated fats and trans fats as much as possible, and higher in Omegas 3 & 6.  My husband and I started this diet back in early to mid December, but then allowed for some leeway around the Christmas holiday.  Our idea was to ease into it, then really make it a priority in 2011.  We have done pretty well on this diet, I cannot remember the last time I ate hamburger, I am always reading labels at the grocery store, and have found a website that has some great low-fat recipes (of all that we have tried, we have only disliked one recipe).  We especially liked the Cool Tuna Wraps recipe.  I have been toying with the idea of the occasional meal with red meat because there are some benefits to red meat, but I cannot decide what to do.  Increasing the Omegas has been a little tricky because my husband doesn't like much fish/seafood and we live in Kansas so we don't have really fresh fish/seafood options, but I try to get fish/seafood when we go out to dinner and we have increased our tuna intake.  I have already noticed my pants fitting looser, which isn't a bad thing, but was not necessary nor an intended benefit (I was happy with my healthy weight of 120 at 5'4").  Hopefully we can keep the diet up throughout the year and years to come (even if it doesn't help with my symptoms, it is always good to eat healthy). 

Number Two:
I began wanting to get more involved with everything MS back in about October.  I had gotten over the shock of my diagnosis and began wanting to do something about it.  I started coming up with ideas, I emailed my local National MS Society chapter and then found out about the Walk MS Committee.  I decided that the Committee would be perfect for me since I had been involved in the Walk before and it provided me with an opportunity to get my foot in the door to getting more involved.  We had our first meeting in December and will meet once a month until the walk.  I have found some companies to be corporate sponsors and am working on more.  Also, I will be asking local businesses to display rack cards (kind of like a mini brochure about the Walk).  I am so glad that I got involved in this - I look forward to this opening up many more opportunities for me to be involved.

Number Three:
This "resolution" wasn't actually made until about two weeks ago (the idea came as another way to open doors to be more involved).  But, as you can see, I have done pretty well with this "resolution" so far.  I have posted something everyday so far.  I am guessing that I will probably taper off a little, but I am determined to post, at the very least, once a week.  Daily posts may be a little too difficult to keep up for the entire year, but I WILL continue to post throughout the year.  And, hopefully, by the end of the year, I will have reached out to someone.

Number Four (the resolution gone bad):
For the past couple of months, I have had visions of getting back into an exercise routine.  Last year, my husband and I had a gym membership and were really good about going to work out.  Then, I started having symptoms and working out became increasingly difficult.  First, when we thought I might have a pinched nerve or some other back ailment, I was told to take it easy.  Then when I started having difficulty walking, I had even more difficulty running (which had been a big part of my workout).  Then I just kind of gave up on working out altogether (with the exception of taking the dog for a walk which we barely do now since it is cold outside) and we ended our gym membership since we weren't really using it.  In all fairness, we were house hunting from September/October until we entered into the contract for the house that we closed on on December 22nd.  Then we moved, we were all moved in by the first of the year and since then we have been furnishing and making the house our home (it is our first house).  So, I used the house hunting, moving, etc. as excuses for not working out.  Now, however, I have no more excuses.  I got a free Yoga for MS DVD from this website, but have yet to use it.  We have an unfinished basement which I could utilize as a workout area until we start working on finishing it, but I haven't done that either.  So, since the first month of 2011 has almost come to a close, I am resolving to begin my new workout routine by February 1st.  Working out has always been difficult for me - I hate it.  I always played sports so that was my workout.  But I know there are a number of benefits to exercise and I intend to start reaping those benefits.

Anyone have any thoughts on what exercises would be good?  Keep in mind that I have very limited materials;  I have some light dumbbells, a stability ball, and some resistance bands. 

Thursday, January 27, 2011

Since My Diagnosis

As I sat at work today, I had the sudden realization that I had regained almost full feeling in my left hand!  In late November, I began to notice some numbness in my left forefinger and thumb.  That numbness quickly spread into the rest of my left hand.  Now, for clarification, I don't mean to say that I had absolutely no feeling whatsoever in my hand, just that I had reduced feeling.  The numbness I experience almost feels as though the skin has gone numb.  I can feel pressure, but the sensation is reduced and feels abnormal.  It was really bad at one point - I had problems picking up the phone and typing with my left hand, but I got used to it and just made it work.  The numbness started to dissipate toward the beginning of this year and by the beginning of this week, I was only noticing numbness in my fingertips.  Today, it feels almost normal, I only notice slight numbness in my fingertips when I rub my fingers against an object.  Very exciting stuff!  It is weird how I just get used to the numbness and then all of the sudden it hits me that the feeling is gone.

Although my hand is starting to feel normal again, my feet are back to feeling numb.  My feet have experienced numbness almost constantly since May 2010.  Another clarification, sometimes it is only my toes that feel numb, other times it is the entire foot, but it always affects both feet at the same time in the same way.  They were numb for awhile, then they went back to normal for about three months, then by the time I was diagnosed, they were numb again.  Also, when I first experienced the numbness in my feet, the numbness would spread into my lower legs (generally when I took a hot bath/shower or was outside in the heat).  From early September until mid-December, my feet experienced some kind of numbness at all times.  Then the numbness in my feet was gone for about a month, only to return in mid-January, only this time it brought with it numbness in my thighs which sometimes spreads into my lower legs.  So, as I sit here today, my feet are almost entirely numb and my thighs are numb too.

Also, back in December, I experienced numbness in my torso, mainly the left side.  At one point or another, the numbness had affected every area on my left torso and some parts of the right torso.  By the end of December, that feeling had mostly gone away, but there were times that although it didn't necessarily feel numb, it definitely felt weird and not normal.

The other symptom that has been nearly constant since its onset is the L'Hermittes.  I began noticing a tingling sensation in my lower back when I put my head down back in late July.  I actually was excited about this at first because I thought that this sensation lent some credibility to my hope that all I had was a pinched nerve or other back-related issue.  But when I explained this symptom to my neurologist on that fateful day in September when I learned I had MS, he explained that the sensation I was experiencing was called L'Hermittes and it is a hallmark symptom of MS.  Since I first noticed the L'Hermittes symptom back in July, there have only been a few weeks during which I have not experienced L'Hermittes.  Some days are worse than others - some days I just feel a slight tingle in my lower back and other days the tingling sensation will be from my lower back all the way into my feet.  I have heard that, for some people, L'Hermittes can be painful.  Luckily, I have not felt any pain when I experience L'Hermittes, it is just an annoying abnormal sensation.  Hopefully, it doesn't develop into something painful.

As you may remember, in my "Journey to a Diagnosis" post, I mentioned experiencing difficulty walking which was accompanied by a feeling of nervousness or butterflies in my stomach.  This symptom, which I first noticed in May 2010, was gone by the end of July 2010.  Unfortunately, it returned in early January 2011.  It only lasted for a week or two and overall it wasn't horrible.  However, I do remember a couple of days where it really took a toll on me.  For instance, my husband and I were shopping one day and I suddenly felt as though I could barely move.  All I had to do was stop for a second and then slow down a bit, but it is really frustrating (and a bit scary) when that feeling hits.  I have not had any of these problems within the past week, so hopefully that won't return any time soon.

As far as I can tell, these have been all of my symptoms since my diagnosis.  In addition to the physical symptoms, I sometimes feel as though my cognitive functioning, such as memory, has been affected, but I cannot really measure that so I am not sure.  I know we all have moments where a word or something that you should know just isn't coming to you, but for a few weeks in November/December, I felt like that was happening to me more frequently than normal.  Maybe I was just noticing it more or maybe it was a symptom, who knows.  Either way, I hope my mind is the very last thing to be affected by MS.  I know I would absolutely hate to lose my ability to walk, especially for someone who has always been pretty active.  However, I think I could handle that better than losing my cognitive functioning.

I hate using the words "normal" and "abnormal" or "not normal" in describing these symptoms, but I don't know of a better way to explain it all.  The sad thing is that nowadays, the numbness and L'Hermittes has begun to feel normal to me.

Sorry, if this post didn't make a whole lot of sense.  I just felt like telling you all a little bit more about my personal experience with MS.

Wednesday, January 26, 2011

Easy Ways to Give

I found a couple more ways to give and a vacation idea to run past my husband!

If you live in or near New Jersey or Pennsylvania, then the next time you are cleaning out your closet, consider donating those clothes, towels, blankets, etc.  The Clothing Donation Program through the Multiple Sclerosis Association of America (MSAA) operates throughout New Jersey and Pennsylvania.  Last year, MSAA’s Clothing Donation Program raised tens of thousands of dollars to meet the needs of its clients.  The MSAA has over 120 collection bins placed throughout New Jersey and Pennsylvania and they are expanding their network of easily identifiable collection bins with the colorful MSAA logo on the front and “Clothing Donations” clearly printed on the side panels. The collection boxes are emptied approximately every three days.  For more information about the Program, click here.  To find the collection bin nearest you, click here

The MSAA also has a cell phone recycling program. You can simply send MSAA your used cell phone(s).  The MSAA accepts any deactivated, hand-held cellular phones. The majority of donated cell phones are refurbished for re-use by other charitable groups. Those cell phones that are either obsolete or damaged are disposed in an environmentally safe manner.  The MSAA will also accept used laptops, LCD Monitors, MP3 Players, GPS units, digital cameras, camera lenses, gaming systems and video cameras as part of this program.  If you have one of these items that you need to get rid of, why not send it to the MSAA where it can do some good?  For more information and the address where you can mail your items to, click here.

In addition to these opportunities to give, I found the Multiple Sclerosis Foundation's "Cruise for a Cause."  "Now entering its tenth year, the MSF Cruise for a Cause provides an empowering adventure.  Traveling with fellow MS Cruisers, their families, as well as healthcare professionals, and of course, MSF staff, the trip is an unforgettable experience.  With the magnificent sun drenched and exotic Caribbean ports of St Thomas, St. Maarten and Bahamas as our ports of call, the Oasis of the Seas will make our 2011 Cruise for a Cause a dream come true for people with MS."  Sounds pretty awesome to me!  Definitely something to discuss with my husband. 

Tuesday, January 25, 2011

State of the MS Address

As I listen to Obama's State of the Union Address, I sit here reading about MS research and drug therapies (hence the title of this post).
When I was first considering the different treatments, I spoke with a co-worker who has MS; she offered me a lot of reading materials on all of the therapies and told me her experiences with some of them.  At the time, I was only aware of the ABCR drugs.  She gave me information on those and then introduced me to Tysabri.  She essentially told me that it was one therapy she would never try because, although all medications have side effects, few state that a side effect is potential death (from developing a very serious infection).  I was reminded of that while reading this article.  Apparently, as of this month, there have been 85 confirmed cases of progressive multifocal leukoencephalopathy (PML, a viral infection of the brain that usually leads to death or severe disability) among people who have used Tysabri since it became available in 2006.  That seems very scary until you learn how many people have taken Tysabri.  The article says that "based on the 85 cases, the overall risk of PML is estimated to be 1.06 per 1000 patients."  Not terrible odds, but, personally, I still find it a little unnerving that increases the risk of PML.

In more optimistic news, this article talks about the progress made in MS research in 2010.  It says, "Exciting progress was made in 2010 in virtually every field of MS research." The article highlights progress made toward finding better therapies for MS, including the availability of the first disease-modifying therapy for MS taken by mouth; progress made toward finding ways to repair nervous system damage and toward improving quality of life and specific MS symptoms through exercise, meditation, rehabilitation and medications, including the first therapy specifically approved to treat a symptom of MS (Ampyra, which may help to improve the walking ability of people with MS); and progress toward understanding factors that influence whether a person develops MS, bringing us closer to finding ways to prevent the disease.

I will talk about each of these areas of progress in more detail in later posts.

Thank you to everyone who has sponsored me in the Walk MS 2011 - I have been absolutely overwhelmed by everyone's generosity.  I have raised 74% of my goal amount thanks to so many of your amazing contributions.  Also, thank you to everyone who has reached out to me through email, mail, facebook, and messages left through the donations page on the Walk MS website.  Your kind words have really moved me, I am so lucky to have such incredible people in my life.  Thanks again!

Monday, January 24, 2011

More Ways to Help

Today, I spent some time trying to learn of more ways that I can help to fund MS research.  I mostly looked at the National MS Society's website.  Along with the obvious ways to donate, including pledging a participant of Walk MS, Bike MS or another similar event and donating your car, I found some pretty cool ways to "donate."

On my local chapter's page, I found this idea:  "Your trash can become our treasure! Our Kansas City office (7611 State Line Road in KC, MO) has a large recycling bin that’s open for your use. Every time we fill it up, we get paid for the paper! The bin accepts catalogs, magazines, newspapers, junk mail, office paper, fax paper, school paper, notebooks, and folders. So help us and the environment at the same time. Drop off your recycling in our parking lot today!"
I think this is a genius idea!  It is a no-cost, easy way to "donate."  I know it may seem like a pain to drive your recyclables somewhere when most places have some kind of recyclable pick-up, but if you reserved all of your paper recyclables and took them to the location once or twice a month, you could make a big impact.  If your household is anything like mine, you have a LOT of paper trash.  Between junk mail, used school notebooks, magazines, catalogs, and the like, we would come up with quite a bit of trash.  Then that trash can be turned into dollars for the National MS Society.  I was really frustrated to see that this is not offered in my area.  I emailed our local office and suggested that they look into something like that for my area.  If you live in the Kansas City area, you should definitely consider participating in this and if you know someone that lives in the KC area, forward this info to them.

Another great idea was found on the NYC Chapter website.  "Buy something for yourself and help the NYC Chapter in the process! First join iGive, then whenever you purchase items online at the mall at iGive, up to 25% is donated to the chapter, at no cost to you!"  Since so many people shop online these days, this is a no-brainer.  The problem is that this program probably has to compete with websites like Ebates and MyPoints which reward you for shopping online.  For more info, go to their website.

Another good idea from the NYC Chapter: "Raise money for the New York City - Southern New York Chapter just by searching the Internet using GoodSearch - it doesn't get any easier than this!
Raising money to help create a world free MS is just a mouse click away! Use GoodSearch.com like any other search engine (they've partnered with a leading search engine, Yahoo, to ensure the best results), and each time you do, money is generated for the chapter.  Every time you use GoodSearch, you raise approximately $0.01 for the New York City Chapter. Think about how many times people search the Internet each year - the pennies can quickly add up! For example, if 1,000 Chapter supporters searched twice a day, we would receive an estimated $7,300 per year to help fund our mission: a world free of MS. If 20,000 of our supporters and volunteers used it twice a day, we’d earn approximately $400 a day!"
For more info on this, click here.

The next time you buy flowers online, consider going through the Pacific South Coast Chapter (check it out).

The Central North Carolina Chapter offers the Lion Shop & Share program.  Food Lion has a new program that will help you raise money for MS called Lion Shop & Share. Once you register, each time you shop at Food Lion and use your MVP card, a portion of your total grocery purchase will be donated to the National MS Society.  For more info, click here.

The South Florida Chapter also provides "Purchasing that Supports the National MS Society:
Companies have joined the movement to create a world free of multiple sclerosis by donating a portion of their sales to the National Multiple Sclerosis Society – South Florida Chapter. We salute these companies for making the MS cause a part of their business."  To see the participating businesses, click here.

The Greater New England Chapter provides a number of "other ways to give," including making online purchases from participating businesses.  The next time you want to send a box of chocolates, consider visiting this chapter's site first.  For more info, go to their website.

The Ohio Buckeye Chapter also has a "Give While You Shop" program.  For information on participating businesses, click here.

Colorado and Wisconsin both have a "Tax Check-Off" Program.  To learn more, go to the Colorado site OR the Wisconsin page.

I know this is a lot of information, but I am so impressed with the various ways of giving that I had to share.  Hopefully, people from all over will see this and learn of a new, easy way to get more involved.  If you know of someone who might be interested in these opportunities to give, please send this information along! 

Sunday, January 23, 2011

Amazing Support

I have the most amazing support system!  I have a wonderful husband who has been very supportive and caring throughout this whole ordeal, from the diagnosis to my desire to be more involved with MS research/funding.  He is always understanding and he is always concerned about my well-being; it is nice to share my life with such a loving person.
My family is great!  My parents are so loving and supportive of everything I do (they always have been).  They offered to do the walk with me this year, which is awesome.  Plus my mom is helping me make contacts for possible corporate sponsors for the walk.  I know this has been hard on them, but they are always there for me no matter what and that is pretty amazing.  My sister is a problem-solver, so when I told her about my diagnosis, she immediately started thinking of what we needed to do to "combat" this and to get more involved.  She has been so incredibly supportive and generous - she forwarded my request for fundraising contributions to some people she knows which generated over $100 in donations thus far.  Her friends are pretty awesome, I got some very nice messages from them along with their donations.  I am so grateful to have such a great sister.  My brothers are there for me no matter what, I know all I have to do is ask!  They are the best and I know they would do anything for me.  The same goes for my sister-in-law and soon to be sister-in-law; they both are very caring and supportive!  I couldn't ask for a better family.
On top of a great family, I have wonderful friends!  One of my friends is going to fly to Wichita, KS from Chicago over the weekend of Walk MS to walk with me!  How cool is that!  All of my friends are always there for me - I know I can always count on them to listen or help me out in any way that they can.  I am not always the best at keeping in touch with people, but I have such great friends that it doesn't matter - they are like family to me.  I know that they are always there for me and I hope that they all know that I would do anything for them.
I also have a great extended network of people who I know care about me.  I have great co-workers.  Also, family members of my friends and family, plus my family members' friends are all so supportive.  It is so amazing to know that so many people care about me. 
I am so lucky and I just wanted to give a shout out to all of the amazing people in my life that have made dealing/coping with my diagnosis so much easier.
I know that not everyone is so lucky, which is why I hope that this blog reaches others with MS.  I want to do whatever I can to be there for others who are struggling with MS.

Saturday, January 22, 2011

Today's Plans

I am headed to my nephew's 4th Birthday party today, so I may not have an opportunity to post later today.

Friday, January 21, 2011

An Outlook for the Future

I intend this blog to be a mixture of my personal experiences with MS and news related to MS.  Since I have now given some background about myself and my diagnosis, I will now talk a little bit about drug therapy news.
On January 12th, my husband and I attended the National MS Society's "Snowflake Social," a kind of kick off event for the local Walk MS.  At the event, a nurse for a local neurology center spoke about the drug therapies that are in the making.  She started off with a brief discussion about the ABCR drugs (Avonex, Betaseron, Copaxone, and Rebif) which have been around for over a decade.  She then turned the discussion to the oral medications and other new therapies in the works.  Today, I would like to start with a discussion about Gilenya.
Gilenya (http://www.gilenya.com/index.jsp?usertrack.filter_applied=true&NovaId=4029462006785065245) is the first FDA-approved oral medication for MS. Gilenya is "thought to act by retaining certain white blood cells (lymphocytes) in the lymph nodes, thereby preventing those cells from crossing the blood-brain barrier into the central nervous system (CNS). Preventing the entry of these cells into the CNS reduces inflammatory damage to nerve cells."  See http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/medications/fingolimod/index.aspx
As with all medications, there are potential side effects.  As the nurse noted, if we read the list of side effects of aspirin, most of us probably would not take it; however, I feel that with these newly-released disease-modifying drugs, the side effects may be worth a closer look.  From the sounds of it, there are two great drawbacks to Gilenya.  One is that Gilenya may cause your heart rate to slow down, requiring monitoring during your first six-hour period on the drug.  The second is that, on Gilenya, one is more prone to infection because Gilenya lowers the number of lymphocytes in the blood.  Another side effect is swelling of the macula (a spot in the center of retina of the eye).  This swelling can cause symptoms similar to those of optic neuritis.  Furthermore, liver problems can be a side effect.   
I am not a doctor, nor do I have ANY medical training; my purpose in sharing this information is simply that - to share information.  Sometimes people don't know where to look for information and I feel, as a fairly intelligent person and a good researcher, I can provide a starting point.
Here are some links to news articles regarding Gilenya:
The website for the makers of Gilenya:

Thursday, January 20, 2011

A New Year

After I was diagnosed in September, I spent the rest of 2010 digesting the news.  I learned about the different drug therapies and began a drug therapy.  I tried, mostly, to "keep it together," however, I did have a couple of meltdowns.  There have been times that I question "why me?"  I am not sure I am supposed to know the answer to that, but I feel like I should be able to turn this "bad" news around and do some good.  That is what I intend to do in 2011 and that is, partly, why I began this blog - I hope to shed an optimistic light on MS.  I am not really one for new year's resolutions, but I have two resolutions this year.  Becoming more involved with MS in any way I can and I recently decided to make this blog my second new year's resolution.  Hopefully, by the end of the year this blog will have helped someone, or, at least, moved/spoken to/touched someone.  In order to achieve my goal, I feel that, first, some background is necessary.  Then I plan to post on an array of issues relating to MS, including research that is on-going and any information I can find about new drug therapies being developed (both oral medications and injections).

I was first exposed to MS (to my recollection) in college, when I learned that my roommate and close friend's mom was diagnosed with MS and when a friend from high school was diagnosed.  I can't say that I really knew what MS was at that time, but I knew enough to know that I wanted to try to help.  Unfortunately, throughout college, I never got involved or really helped in any way.  I can't remember the first year my roommate and her sisters formed a team and participated in Walk MS on behalf of their mom, but I do remember being inspired by them and thinking I should do that too.  I believe I was in law school at the time and still did not get involved.  Finally, in 2008, I found the Walk MS in my area, formed a team and walked on behalf of the two people I knew, at the time, who'd been diagnosed with MS.  I have been involved with Walk MS ever since in some manner.  Then I was diagnosed with MS myself and, as I discussed earlier, I decided to become more involved.  This year, I am not only walking, but I am also working on the Walk MS Committee, helping to organize three local walks.  See the post at the top right of the page for more information.   

Wednesday, January 19, 2011

Journey to a Diagnosis

My journey started on April 8, 2010.  My husband and I were flying to North Carolina to meet our new twin nieces and I began to notice a pain right behind my right eye.  It was as though the pain was in the nerve or muscle at the back of my right eyeball.  I also noticed some blurred vision.  I thought there was a problem with my contacts so I wore my glasses the entire weekend in North Carolina.  When we got home, I had a doctor's appointment scheduled on the 13th.  At the appointment, I mentioned the eye pain and my doctor told me to see my eye doctor.  On April 15th, I saw my eye doctor regarding the pain and blurred vision.  She ran a gamut of tests and we tried some eye drops for a week.  On April 20th, I returned to the eye doctor after no relief with the eye drops.  She ran some more tests, then ordered an MRI of my brain.  That sounded scary so I asked what she was looking for and she told me that the worst was MS.  That was extremely hard to hear, but I convinced myself that there was no way that I had MS.  On April 30th, I had an MRI of my brain done and the eye pain had almost disappeared by that time.  About a week later, I was told that the MRI was "unremarkable."  The eye pain was gone by then and I began to think it was all just a fluke.
Then, on May 11, 2010, I began to notice numbness in my toes (which would spread into my shins at time, especially when I took showers) and a difficulty walking that was really difficult to explain and comprehend (it felt as though I had butterflies in my stomach and somehow they prevented me from walking; it seemed as though the message to walk wasn't getting from my brain to my legs, but was causing a nervous feeling in my stomach).  I also noticed that if I got worked up about it or got (actually) nervous, the severity would increase.  I began to do a lot of online research at this time and every time I had a new symptom, I would look it up and the one thing that kept coming up was MS (other possibilities showed up, but nothing that fit as well as MS).  I didn't want to believe that this was MS, especially after being told that my brain MRI was unremarkable.
After experiencing the numbness for about a week or so, I went back to the doctor.  She referred me to a neurologist, but the appointment was about a month away.  In the meantime, I started to see a chiropractor, hoping a pinched nerve was the problem.  About two weeks after starting to see the chiropractor, the numbness had gone away - I was so relieved and very optimistic that a pinched nerve was the culprit.  I was still have some difficulty walking, but it didn't seem to be as bad.  With such great results, I decided to cancel the appointment with the neurologist.  By the end of July, I felt "normal" again.
Then, in early August, I began to notice a tingling sensation when I lowered my head (chin to chest).  I later would learn that this phenomenon is called L'Hermittes (a common symptom of MS).  On August 18th, my thighs were experiencing pretty severe numbness.  At that point, I stopped going to the chiropractor, went back to the doctor and asked for a new referral to the neurologist ASAP.  The doctor also ordered an MRI of my lower back in hopes that there was a slipped disc or something causing pressure on a nerve.
On September 8, 2010, I saw the neurologist for the first time.  I hand-carried discs with my MRIs as well as the radiologist's report from the brain MRI.  I went to the doctor's office expecting to have some tests run and did not think that I would learn anything regarding a diagnosis that day.  I still knew MS was a good possibility.  After an exam, the neurologist went off to look at the MRIs.  When he came back, he told me that the brain MRI was NOT unremarkable.  He asked what I had been told as far as possible diagnoses.  I told him that I knew the worst was MS and I prepared myself to hear that I'd been diagnosed with MS.  The neurologist nodded his head and confirmed my fear.  He told me that we caught it early, showed me the lesions on my brain on the MRI, and explained the next steps (choosing a therapy, etc).
That is, essentially, my journey from April 8th to September 8th that led to my diagnosis.  I have Multiple Sclerosis.