Multiple Sclerosis

30 Things About My Invisible Illness

I was going through the drafts of posts that I have and I found this questionaire.  I am pretty sure I got this last September during Invisible Illness week and for some reason I never filled it out and posted it.  I figured I would fill it out now and compare it to the one I did a few years ago.  If you want to see the other one click here and it will take you to it.

1. The illness I live with is: Multiple Sclerosis
2. I was diagnosed with it in the year: 2000 or 2001 I believe
3. But I had symptoms since: I was in 5th grade
4. The biggest adjustment I’ve had to make is: Realizing that I have to slow down and pace myself.
5. Most people assume: That nothing is wrong with me and that I am just lazy
6. The hardest part about mornings are: Getting up if I have been up most of the night or if I am in pain
7. My favorite medical TV show is: I don’t really watch any of these since they took Discovery Health off the air in my area.
8. A gadget I couldn’t live without is: My computer & my cell phone calander
9. The hardest part about nights are: Falling asleep and staying asleep.
10. Each day I take __ pills & vitamins. (No comments, please) 7 everyday and then maybe 3 or 4 more depending on pain that I am having.
11. Regarding alternative treatments I: Really want to try acupuncture but I don’t have the money to try it right now.
12. If I had to choose between an invisible illness or visible I would choose: Visible
13. Regarding working and career: I currently work as a receptionist and I also design blogs but I had to quit my job in the medical field because of it.
14. People would be surprised to know:That  my hands are numb and I had to reteach myself to type.
15. The hardest thing to accept about my new reality has been:Knowing that I can’t do the same things other people my age do and also knowing the people get scared off when they find out I have MS
16. Something I never thought I could do with my illness that I did was:I can’t really think of anything.
17. The commercials about my illness:I haven’t really seen any commercials about MS
18. Something I really miss doing since I was diagnosed is:Since I have had it so long I don’t really miss anything because I have been dealing with this for years now.
19. It was really hard to have to give up: It has been hard for me to stop eating gluten because I love bread.  I didn’t find out that I couldn’t eat gluten till about 5 years ago but when I don’t eat it my MS does so much better.
20. A new hobby I have taken up since my diagnosis is: Since I have had MS for so long I haven’t really picked up anything new other than design blogs and blogging.
21. If I could have one day of feeling normal again I would: There isn’t anything I  would do differently than what I do now.
22. My illness has taught me: Is to slow down and enjoy the little moments
23. Want to know a secret? One thing people say that gets under my skin is: “I am sorry” or “That has to be hard”
24. But I love it when people:Don’t judge and take the time to listen and 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 choice you have”
26. When someone is diagnosed I’d like to tell them:Do your research because knowledge is power!
27. Something that has surprised me about living with an illness is:How shallow and rude people are and can be.
28. The nicest thing someone did for me when I wasn’t feeling well was:Just be there
29. I’m involved with Invisible Illness Week because:I want everyone to learn about invisible illnesses
30. The fact that you read this list makes me feel:Good because it means that you are willing to learn and you are judging.

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MS Tuesday-Depression & Anxiety

I am going to talk about depression and anxiety which are two  Multiple Sclerosis symptoms that have be living with for the past couple of years.  Growing up never had an issue with anxiety and what issue I did have with depression I was able to control and I didn’t have to take medication for it.

About two years ago I had to get on medication for depression because I literally could barely function at work and I was always on edge.  After I started the medication it helped but I noticed I could no longer handle things that I used to love to do.

For example I have always loved being alone.  My grandparents went on a cruise for 10 days last month and I was so anxious because I was home alone most of the time.  The day after they left I literally sat in my room because I was so anxious.  I also found myself checking the door locks a hundred times where as when they are home I never check them unless I have to get up and let one of the cats in.

I believe that in my case my depression and anxiety are cause by the MS.  I know that not everyone with MS will have both of these symptoms and that some people who have these symptoms but not have MS.

Before I started on Tysabri when I would have MRI’s to check and see what the disease was doing I always had active lesions but I rarely had any symptoms.  I believe that while I at the time didn’t show any outward symptoms that those active lesions are what caused my anxiety and depression issues that I currently struggle with.

Right now I take Zoloft for the depression and I don’t treat the anxiety because I have learned how to talk myself through it.  I also have found that removing myself from the situation that is causing the anxiety is a great way for me to cope with it as well.

I received the book called “It’s Not All in Your Head: Anxiety, Depression, Mood Swings, and Multiple Sclerosis” by Patricia Farrell.  I can’t remember the site where I was signed up and got the book for free but from the little bit of it that I have read it can’t wait to read more of it.

I would recommend the book to anyone with MS or anyone that has a family member or friend with MS.  Once I am finished with it I will for sure write a review and I think I will give it away to someone with MS.

In the end I want people to know that is you have developed anxiety or depression that you aren’t alone and don’t be afraid to ask for help.  At first it was hard for me to ask the doctor about it and start the medication but the more I learn about MS and what it can cause I understand why I have had to go on medication.

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MS Resources

This week I decided that I would post some Multiple Sclerosis resources that I have found and that I use on a regular basis.

Tysabri
Avonex
Now I am sure there are ones I haven’t listed or haven’t found so if you have one you like please leave it in a comment and I will update this list with them.
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MS Tuesdays-Medications That Don’t Work For Me

This week for MS Tuesdays I am going to talk about the  medications that I have taken to treat MS and why they didn’t work for me.  I have tried quite a few of them and I hope that people that this might help someone who is having a hard time finding a treatment that may work for them.  Please don’t base your choice for treatment on this post because just because something didn’t work for me doesn’t mean that it won’t work for you.  My best advice to research them and then with the help of your doctor go with the one that you both think will work the best for you.

I have taken 3 treatments other than the Tysabri that I am taking right now.  I have taken Avonex, Betaseron, & Copaxone.  I am going to talk a little bit about each one and how the effected me while I was taking them.

  • Avonex- I started out on this medication when I was diagnosed at 15.  Let me just say that this medication I took on and off for years because it was the one medication at the time that had the least amount of shots a week that you had to take.  This medication was rough for me to say the least.  They say it has flu like symptoms.  The best way to descride how the medication made me feel for the whole weekend after I took it is my skin literally hurt to have anything touch it.  It didn’t matter if I took the Benadryl like they told me to.  Every week I was sick all weekend and as time when on they said the reaction should get less and less but for me it got worse every week.  Like I said I tried this medication for years on and off because it was only taken once a week unlike all the other treatments at the time that are taken multiple times a week.
  • Betaseron-This medication is taken every other day.  So one this medication was literally sick everyday of my life because I never got used to the side effects of this medication as well.  This medications has the same side effects as Avonex has.  This one had an autoinject so that I could give myself the shot but me being me I couldn’t push the button I would sit there for an hour and in the end someone would have to come and push the button for me.  I hate giving myself shots and since no one else wanted to give me shots this medication did last long either.

Here is the link to where I talk about all the interferon treatments they have.

  • Copaxone-Now this medication isn’t an interferon so they thought that this one should work for me.  This medication is given through a shot everyday day.  Now this really didn’t work for me because I couldn’t give myself shots.  I think I tried this one for about a year but towards the end I wasn’t taking it regularly because all the injection sites would get red and develop hives.  I will also say that at this point in my treatment I was being a stubborn teenager and I just wanted to ignore the disease and act like it wasn’t part of my life.  Here is the link to the original post where I talk about all the possible side effects of this medication.

There are more than just these 3 medication out there for MS and last year the did release the first pill you can take for MS.  If you want to read more about that you can go and read this post where I wrote about it before.

The best advice I am give anyone is to research treatment options and then with the help of your doctor pick the one that will work best for you.

If you want to know more information or want me to write about something please let me know in the comments below.

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My MS Meds

I am not sure if anyone would be interested in the medications I currently on for my MS but I am sure there is someone who would be interested to know what is working for me right now and all the things I have tried that hasn’t work for me over the 11 years I have be treating the MS.  For this post I am going to talk about the medications I am currently on and what I am taking them for.

Tysabri-I am currently using this to treat the MS.  I have been on it for over 3 years now and even though it is dangerous I won’t stop taking it because it is the only MS drug that is out there right now that is controlling the MS.

Baclofen- I take this three times a day.  There are some days that I may only take it once but depending on pain & how I am feeling I may take it all 3 times.  I use this for the spasms I have and I also use this because of my back injury.  If I don’t take this at night I wake up stiff in the morning and in tons of pain.

Zoloft(sertraline)-I take this once a day and it is my antidepressant.  Depression runs in my family but I also think that the MS has made mine worse and also made me super anxious.

Loritab- I use this as needed for pain.  I get 20 pills a month and I usually use them all but  most of them are use the weekend and week after my infusion because that is when I tend to have the most pain.

Fiorinal- I use this for my migraines.  I have had migraines since I was in 5th grade.  Most of the time if I can catch it at the beginning I can stop it from getting super bad but on days that I don’t catch it or it doesn’t respond to the usual things I have to take 2 of these.  The thing I love about this medication is I can still function at work while I am taking it.

I also use things such as Benadryl, Tylenol, and Ibuprofen almost daily.  If you have any questions about any of the medications please let me know.  Next time I am going to write about what MS treatments I have used and why I stopped using them.

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What Is Multiple Sclerosis


I am sure  most of you know that I have Multiple Sclerosis (MS).  I was diagnosed when I was 15 or 16.  I know that many people don’t know anything about MS so I am going to write a little bit about it in order to help raise awareness to the disease and to open peoples eyes to what this disease is.

  • Multiple Sclerosis is what they call an autoimmune disease.  This means that the persons immune system for some reason decides it is going to attack some part of the body instead of only attacking viruses and things like that.   In MS the immune system decides it is going to attack the nerves of the CNS (central nervous system).  The CNS includes the brain and spinal cord.  They are not sure what triggers the immune system to think that part of the body is a invader and needs to be attacked.
  • 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 causes permanent disabilities.
  • The body tries to repair the damage that is done but it is never the same. Once the nerve is damaged it won’t ever function the same again.
  • 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. Which makes some people wonder if everyone that has MS actually has the same disease or if it isn’t a few different diseases that just get grouped in with MS.
  • Anyone can get MS.  Women are more likely 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 15 or 16.  Although younger patients are now getting diagnosed because doctors are starting to look for it at a younger ages.  I have noticed though that I have had lots of activity show up on scans but I haven’t had many flare ups that people could see.  In fact if I didn’t tell you I had MS and what symptoms I do have you can’t tell I have it all.
  • 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 who don’t have insurance or even with insurance to afford.
  • It has been shown that treating the disease helps  to stop the progression of the disease but since all the treatments are so expensive there are many people who simply can’t afford to treat the disease.
  • There is always new treatments in the works and exciting things happening in research that hold so much hope for future generations.  They came out last year with the first pill you can take once a day for treatment.  Up until the pill came out all the treatments were either shots or an infusion.
  • There is currently no cure for MS.

I think I  covered most of the major parts of the disease but if you have questions or want any more information please let a comment and I will answer your questions!

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