This week is invisible illness week.  I am going re-post my story so that people can read it that maybe didn’t get a chance to read it the first time.
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First I am going to post some helpful information before I post my story so that you will be able to follow along a little bit better.
  • Multiple Sclerosis is what they call an autoimmune disease.  This means that the person immune system for some reason decided it is going to attack so part of the body that it shouldn’t attack.   In MS the immune system decides it is going to attack the nerves of the CNS (central nervous system).  They are not sure what triggers the immune system to think that part of the body is a invader and needs to be attacked.
  • 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.
  • Anyone can get MS.  Women are more like 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 16.  Although younger patients are now getting diagnosed because doctors are starting to look for it at a younger ages.
  • 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 permanent disabilities.
  • The body tries to repair the damage that is done but it is never the same the the nerve never really functions the same.
  • 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 like me who have the disease to get the treatments that they need.  There is always new treatments in the works and exciting things happening in research that hold so much hope for future generations.
  • There is currently no cure for MS.

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My Story

I began to get sick when I was in 10th grade.  The first really symptom that I can remember is my left leg started to drag.  It would just stop working at random times.  I can remember in gym class that year we had to run the mile for a grade and I did my best but I was going to fail the class because I could run it fast enough because my leg was dragging.   We went to the doctors and lets just say the only reason they did an MRI was because my grandma pushed for it.  When that came back they called us in because they needed to talk to us.  They said that there was what they call lesions on the brain.  They show up as white spots on the brain.  They told us that they needed to do a spinal tap to rule out MS.

The spinal tap in and of it self was a huge ordeal to say the least.  I got the spinal tap on a Thursday and by Saturday I was so sick.  I had a huge headache and was throwing up.  So we went to the ER because it was obvious that my spinal tap hadn’t sealed.  When we got the ER they made me lay in the waiting for about an hour until they took me back to a room.  After they knew what was going on they wanted to send me home because the guy that could fix it was on call and he didn’t want to come and do a blood patch.  He finally came in after my grandparents raised a living hell because I could have died if I didn’t get a blood patch ASAP.
When the results of the spinal tap came back they called us in again and told my and my grandparents and I had Multiple Sclerosis.  They wanted to start me right away on Avonex.  I don’t really remember much of the next couple of months.  I think I was still numb to the whole situation.  What I do remember is how sick the medication made me every weekend.  I took the shot on Friday nights and spent the whole weekend with flu like symptoms. I stopped taking that medication after awhile and started on Copaxone.  With that one I had to take a shot everyday and that didn’t last very long either.
I was pretty stable and not much went on until a year ago and that is when my hand went numb and it got hard to do anything with them.  Slow I have been able to use them more but it feels like they are asleep all of the time anymore.  I started on Tysabri about a year ago and so far it has worked the best but I also has a major problem with it as well.  You can develop a condition known as PML that will basically make you a vegetable.  They are finding out that the longer you are on the drug the higher your chances are of getting this serious condition. I am not sure how much longer I will be on this medication but I don’t have any other options right now.
That is my story in a nutshell.  If you have any other question feel free to ask me I will answer any questions that you may have.  

5 Comments on MS Tuesdays

  1. My man's cousin has MS. I just saw her a few months ago and she was walking then, now she's in wheel chair.
    I can't believe the doctor wouldn't come in and do the blood patch! Sounds like that place is full of quacks.

    Reply

  2. Keep talking and keep sharing. It will eventually become common knowledge which hopefully will lead to greater compassion from society. I find a lot of bravery in my fellow chronics!! Hugs. Tammy

    Reply

  5. My friends MS began like that … with a numb leg. It was over a year ago, she was 30, and we can't believe how it's progressed. It's heartbreaking. She used to be very sporty and active. Her family is doing all sorts of fundraising to send her to Mexico next year to get the CCSVI procedure. And T-Bone's aunt just got back from Bulgaria where she received her CCSVI procedure, but I haven't had a chance to get any details on how she's doing yet.

    Have you thought about trying to get the CCSVI procedure done?

    Reply

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