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.

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.

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Heat & MS

This week for my MS post I am going to post about a experience I had this weekend.  It was Governor’s day.  This is basically where the national guard units in Utah get inspected by the Governor.  They turn into into a family thing.  My Grandma and I decided that we were going to go and support my little brother.  He had to be there by 8 so we left the house about 7.  When we got there we had to park far away and hike down to where it was going to be held.  We went and got seats and had to wait until 10 for it to start.  At about 9 there was no more shade so I was sitting in the sun.  I didn’t think it was going to be a big deal though so I didn’t move and go and go stand where there was some shade.  After it was over and we found my brother we had the hike back to the car.  This is where the trouble started.  It was maybe a mile hike up hill in the heat.  By the time we made it to the car I was totally whipped out.  The heat made the MS 10 x worse than what is usually is.  I then spent rest of Saturday and all day Sunday in bed.  I am still warn out.
When people with MS are in the heat it causes what is called “pseudoexacerbation”.  This basically you seem to be getting sick but there isn’t any new damage being done to your nerves.  I seems like you are having a relapse but your body is just reacting to the heat.  When your body temperature returns to normal what you where feeling should go away.  Here are a few symtoms that people may feel when they get to hot.
  • Decreased cognitive function
  • Numbness in the extremities
  • Fatigue
  • Blurred vision, known as Uhthoff’s sign
  • Tremor
  • Weakness
For some people this can be so sever that people have to move to cooler climates so that they aren’t constantly sick from the heat.  What people may feel varies from person to person though.  If you have any questions please let me know!
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This is the site I got the information for this post from: http://ms.about.com/od/signssymptoms/a/heat_intoleranc.htm
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Vitamin D & MS

 

I follow a blog and he wrote a really good post about it.  I have heard this before but it seems like the drug companies don’t want to hear about it so it get silenced pretty quickly.  They are starting to see that people with MS are usually low in the Vitamin D.  They are saying that we should take more than the recommended 200 IU that they recommend.  Now that scares me because I do know that if you take to much Vitamin D it can be toxic because it is stored in your fat.  They say that you can’t get to much Vit. D if you are out in the sun.  One MS doctor told me that he thinks sitting in the sun for 20 minutes a day is better for you than taking the pills.  They say that taking 1000 IU a day of Vitamin D will also help protect you against cancers.

There is a higher occurrence of MS in states like Utah and other places where we have winters without much sunlight.  They are starting to see that people that live in places like that should be taking Vitamin D during the winter and even in the summer if you don’t go outside very much.  I also read an article when I was reading things for this post that says smoking makes you have between a 30-80% chance of getting MS.  I can’t help but wonder if my parents smoking when I was little didn’t have something to do with me developing MS.

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I know that Invisible Illness week is over but I wanted to fill this out so that I can update my MS page.

1. The illness I live with is: Multiple Sclerosis

2. I was diagnosed with it in the year: I believe it was 2000

3. But I had symptoms since: I was in elementary school

4. The biggest adjustment I’ve had to make is: Not getting upset if I can’t do everything I want to because I am having a bad day.

5. Most people assume: That I am just lazy because I don’t do much after work.

6. The hardest part about mornings are:  Getting up when I have only had a few hours of sleep.

7. My favorite medical TV show is: I love everything in Discovery Health but they got rid of it because of the OWN network.

8. A gadget I couldn’t live without is:  My cellphone that keeps all of my appointments.

9. The hardest part about nights are:  Being exhausted and not able to sleep.

10. Each day I take 5_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I:  I wish I could afford to do acupuncture because I hear that it really does help people.

12. If I had to choose between an invisible illness or visible I would choose:  I would want a visible one

13. Regarding working and career:  It is hard for me to go to work everyday because of lack of sleep and not feeling well but I have to work so I can have insurance even though we all know that insurance companies don’t pay anything.

14. People would be surprised to know:  That my hands are numb and I had to reteach my self to type.

15. The hardest thing to accept about my new reality has been: I can’t think of anything because I have had this disease so long.

16. Something I never thought I could do with my illness that I did was:  I have tried to not let the MS keep me from doing things.  I do everything that I want to.

17. The commercials about my illness:  I actually haven’t seen a commercial about MS.

18. Something I really miss doing since I was diagnosed is:  I miss not having energy.

19. It was really hard to have to give up:  I don’t feel like I have given up much because I have had this disease so long now and was diagnosed so young that it is just a part of who I am.

20. A new hobby I have taken up since my diagnosis is:  Blogging and blog design

21. If I could have one day of feeling normal again I would:  I am not sure what I would do.  I can’t imagine life without MS.

22. My illness has taught me: To live everyday to the fullest because you never know what your last day is going to be.

23. Want to know a secret? One thing people say that gets under my skin is:  When they say they are sorry that I am sick.

24. But I love it when people:  Take the time to learn about MS.

25. My favorite motto, scripture, quote that gets me through tough times is:  “You never know how strong you are until being strong is the only option you have.”

26. When someone is diagnosed I’d like to tell them:  To learn all you can about the condition because knowledge is power.  I also tell them that they are in charge of their condition and if a doctor wants them to do something that they are not comfortable with they need to kind a new doctor.

27. Something that has surprised me about living with an illness is:

28. The nicest thing someone did for me when I wasn’t feeling well was:

29. I’m involved with Invisible Illness Week because:  Because I want to raise awareness about MS and any other invisible illness.  I know how hard it is for me to deal with people who don’t understand invisible illnesses.

30. The fact that you read this list makes me feel: Good because it means that people are reading my blog!

7 Comments on Multiple Sclerosis

  2. I am so sorry you had to get MS. I am a nurse and I have worked with alot of patients with MS. Stay tough. I will be praying for you. Thank you for sharing

    Reply

  3. Thanks for sharing your story but most important your strength/courage giving other hope to understand MS. I have arthritis in my neck/shoulder/right hip/leg constant aches…I can empathize – but applaud your determination to survive with this disease and show others empowerment and belief..Continued success and blessings…

    Eva Mitton-Urban

    Reply

  4. I understand why hearing “I’m sorry” would get old, but it’s the only way some people know to express concern or admiration. When people tell me that about my bipolar disorder, I’ve decided to hear it as, “I care.” That’s what most people mean, but it can be awkward to say that to someone you don’t know well. Thank you for sharing your story and starting this blog. I’ve learned more about MS from you today than I have from any other source I can remember. I wish you the best of health and many great experiences, from one “invisible disease” person to another.

    Reply

  6. I am finding a lot of overlap in the symptoms for MS with other autonomic dysfunction ailments like POTS and Ehlers Danlos and like MS in these diseases never two cases are similar and display different symptoms that often make diagnoses and treatment a little difficult. One must look for experts instead of rushing into the nearest Cardiologist.

    Reply

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