MS – Page 8 – The World As I See It

MS Tuesdays-Medications That Don’t Work For Me

April 10, 2012

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.

My MS Meds

April 3, 2012

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.

What Is Multiple Sclerosis

March 27, 2012

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!

MS Tuesday-75%

January 10, 2012

***This is was originally posted on October 12, 2010. I am going to be re-posting some of my MS posts because I have gotten so many new followers and I want to share them with my new readers.

I found a stat during invisible illness week that really shocked me but in the same sense it made total sense to me. It said that 75% of marriages where one person has a chronic illness end in divorce. I am shocked by this but I also know it is true because I am one of the 75%. When I worked at the nursing home I saw it all to often. Peoples spouses would leave them once they got sick. On the other had I also saw the husbands that stuck around. I was always in awe of the ones that stayed with there spouses.

It makes me sad that people are so shallow that they leave when things are going as they hoped. It hurts me because I was 100% honest with my husband before we got married and once he finally saw that I was sick he left a few months later. I would never leave someone because they are sick. I know there are a few good men out there who leave but more than not they walk away.

The reason I am not dating is because I don’t want to deal with another person getting scared and walking away. Since the MS is basically invisible well at least right now it is people can’t understand that I am sick. Once they do finally see that I am sick they leave because they “can’t” deal with it. I just irritates me that so many people are scared by something that affects me but I can’t change that about people. I know this post is all over the place but it was hard for me to organize my thoughts on this post.

Thanksgiving & My Birthday

November 28, 2011

Thursday was Thanksgiving here in the US and that is always a super busy day for me as it is for tons of people. I helped my grandma and I also worked on designs most of the day. I want to redo both of my sites but I have no idea what I want to do with my sites. I also come up with great ideas for clients but I can never figure out what I am going to do with my own sites. Oh well I always figure it out in the end. We had my grandma’s family over and there was quite a few of them that showed up. I never did count but we had planned on 17 or so. Once that was over I just went to bed because I was exhausted and I didn’t even do much because the MS is kicking my butt lately.

My birthday was on Saturday and I didn’t do anything other than go to dinner with my grandparents and my brother. My birthday was uneventful this year and I am okay with that! I am not looking forward to Christmas for several reasons but the main one is because I am already so tired I don’t know where I am going to find the energy to do everything that goes on this time of year. I think I will just hide!

I hope everyone had a great weekend and if you are in the US I hope you had a Happy Thanksgiving!

30 Things About My Invisible Illness

October 2, 2011

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!
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