Welcome

Welcome to all who visit this Blog whether you suffer from Multiple Sclerosis or have a loved one who does. Hopefully this will help all who read understand that they are not alone even though MS affects us all in very different ways. Maybe it can help open eyes of those around who do not know the unpredictability of daily life with MS.
The purpose of this blog is to offer support and inspiration. Please feel free to share any useful information that you have gathered along your journey and words of inspiration. It is hard to overcome all the obstacles we must face and it is nice to hear ways people have adapted. Inspirational stories and anectedotes are especially sought after.
If you post and suffer from Vision disabilities you are welcome to post in all capitals and no one will think that you are shouting.
my blog

Saturday, January 8, 2011

Field Guide: Chapter 3 RRMS

Okay, so now you have a slight upswing in knowledge in kinda sort of what this MS thing is, but do you know that there are 4 different types that you can have.  Which one is you?????
The most common type is relapsing-remitting MS (RRMS).  Relapsing-remitting MS is characterized by flare-ups with a period of remission where you come back to normal or as near normal as you can ever be.  Some people go years without an exacerbation (flare-up) while others have more frequent exacerbations.  
Me, I happen to be the more frequent type.  When I ask the Doc why, there is no explanation.  
I suspect that RRMS is the cause for the my aunt's cousin's brother-in-law has MS and is doing just spiffy!!  Chances are they are one of the luckier people with RRMS who either have their relapses controlled with medication or by happenstance. So you see, it is possible that there is a group of people who have MS who are doing well.  Could be the medication is making a big difference in the frequency of exacerbations or maybe they were caught in the very early stages.
My Doc says that the number of lesions does not necessarily reflect the degree of disability in RRMS.  It depends on the location of the lesion.  This is why it is so unpredictable.
Well, that's all for today folks.  My brain is working overtime.  I start my next semester of school this Monday.  Yay (cough cough sarcasm).

Tuesday, January 4, 2011

Field Guide: Chapter 2

So now you know you have MS, but what exactly is MS.  You probably have figured out that it has something to do with the nerves and the brain, hence the neurologist. The following is based on my understanding of MS through the research I have done.  I encourage you to visit the links on this blog to further your understanding.  I am not a physician and I do not play one on T.V.  Knowledge is power, your research may yield a different perspective.
MS stands for Multiple Sclerosis, meaning many scars.  These scars are called lesions when they are seen on a MRI machine.  What causes these scars is still a source of great debate, which is why there is no cure yet.  These scars are seen in the central nervous system which consist of the brain, brain stem and spinal cord.
The most popular theory is that MS is caused by an over active immune system.  Something has triggered your body to see the myelin sheath (the nerves of the central nervous system protective cover) as foreign.  The protein in myelin is essential for the transmission of nerve impulses.  Without this protein, signals are not reaching its destination so to speak, which is what causes difficulty walking, numbness and tingling along with other neurological impairments.
 In the beginning stages of MS, your body has the ability to repair the myelin if not too severely damaged which is why it is so hard to detect on an MRI. But after repetitive damage to the same area, the body loses its ability to repair leading to scarring of the area, this is when it becomes harder to recover from relapses.  At this point you are left with permanent deficits, for example, foot drop.
There are other theories out there, but the thing that every theory has in common as of this point, is no one knows why MS happens or what triggers it.  If they figure that out, then it would help them figure out how to cure it.
That's all for now folks, this chickadee is a little tired.


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


Sunday, January 2, 2011

MS Field Guide chapter one

Well since there is no real field guide to MS, I decided to write one based on my experience, so here is the beginning.


Chapter One:  Getting a Diagnosis
Chapter one is one of the most difficult to concur for some, for others it comes instantly as a shock.  
My experience was not a shock as I had suspected it for a long time.  For some the diagnosis is made over many years, a frustrating process with many tears along the way.  It begins with an odd sensation, a feeling of weakness on one side of your body, or perhaps double vision for a day or two.  There are so many things looking back that I now know were warning signs.  So you go to a doctor after a few weird episodes, the doctor does a basic blood test and tells you that everything's fine.  You probably believe him/her since you feel fine now.  
Then a year or two passes when all the sudden you begin to get clumsy, your legs are heavy and seems that all of your energy has been zapped by some extra-terrestrial or something.  Go back to the doctor who runs same tests, says you are fine, but this time you aren't quite sure that he has done everything. He/She orders an MRI, tells you its normal, your symptoms start to resolve, so you go on with your merry life.
Then one day you can hardly walk, your vision is a little off, unable to think clearly and weakness on one side.  How scary.  Go back to your doctor, who begrudgingly tells you he will send you to a neurologist, but maybe you are just depressed. (yeah right!!!!)  Neuro does some tests, sees some neurological defecits, orders MRI, sees some areas that could be lesions from MS, but not definite.  Orders a slew of other tests including a lumbar puncture, but still not calling it MS.  How frustrating, makes you want to scream.
After a slow recovery,  never feeling quite the same, you develop some new symptoms along with a re-occurring of the old.  This time doctor sends you straight to Neuro or MS specialist and voila........Now after a journey that has occured over the span of a few years, you now have a diagnosis.  The first feeling is of relief  "I am not crazy after all", then it sinks in  "Oh snap, I have MS!!!!"
The "luckier" people will have one episode of optic neuritis (loss of vision, double vision, or other weird vision problem), get an MRI which shows enhancing lesions and get diagnosed right away.  These people have the "Oh snap, I have MS" dialogue right away without all the scars provided by all the doctors along the way.


http://www.muschealth.com/ms/about_ms/diagnosingms.htm