MS

MS Rant

I try to keep my rants off of this blog but I think people that have MS need to see that some days having this disease totally sucks!  I don’t want people to think that because I tend to not post about those days that they don’t exist.  Right now I am struggling because I have to except how I am feeling as the new normal and I don’t want to.  No one wants to know that this is as good as it gets.  I am at the point right now where I need to except it and I don’t want to.  I want to tell the disease to go fly a kite and go away.  I am 25 years old and I don’t want to be dealing with this disease!!!!!  I have knowing that this disease takes so much away from people who have it.  I look at others with the disease and get mad at myself because the are worse off than I am and yet I am still bitching and pissed off because of how I feel.  I know I should be grateful that I am not more disabled but instead I am pissed off that I have to deal with this disease at all.  I was doing so well at staying positive with how things are going and now I am back to when I got diagnosed and not dealing well with it all.  I want to bury my head in the sand and just ignore it but I also know that I can’t do that.  Part of this I am sure is just being 25 and being to damn stubborn for my own good.  I will never totally except this disease!  I know I can’t give up on treatment since it working but hell I am tired of going once a month and having it done.  I am tired of worrying about PML and the disease getting worse.  I am tired of people hearing about my diagnoses and being scared to date me or even talk to me.  I mean good hell it isn’t going to kill them hell it might not even kill me.  I am tired of all the crap that comes along with this damn disease.  I am so tired of being in pain and my doctor not giving me what I need to deal with the pain.  I am tired of being on all the medications that I am on to treat how the MS has made me feel.  I guess it boils down to the fact that I am tired of the disease!

Okay I am going to leave it at that.  Hopefully get this out will help me move on from this point!

Interferon

I am going to talk about the interferon treatments this week but first I have to tell everyone something.  I started this feature because Jacqui said that I should.  She told me that up until she had met me she didn’t know anything about MS.  Well this past week a gentleman left a comment on my blog that made me see that people may not comment on this feature but people are reading it.  He is newly diagnosed and found my blog while researching the medication they put him on.  I was shocked and happy that people are reading my blog and it really is helping people.  To be honest I have been considering not writing about MS anymore because I didn’t think I was helping people but since I heard from him I will keep doing it.  I may not do it every week anymore because I am running out of things to talk about but I will keep doing it from time to time that is for sure.

Now on to this weeks topic.  There are 4 interferon treatments that I am aware of they are Avonex, Betaseron, Extavia, and Rebif.  I have take both Avonex and Betaseron.  I had bad reactions to both of them but because of doctors who were unwilling to listen to me I was on and off them for years.  The major side effects are flu like symptoms.

Avonex is a once a week intramuscular shot.  This medication has to go into the muscle.  I always had to have my aunt who is a nurse give it to me when I was taking it.  I hated these shots and so my grandma would bribe me with things that I wanted so I would take them.  I hated them because they hurt and they made me so sick.  They made me feel like I was burning up on the inside and my skin hurt to be touched.  I can remember waking up in the middle of the night and just crying because I hurt so bad.  All the doctors would say that my body would get used to it but I never did if anything the reactions got worse the longer I was taking the medication.

Betaseron and Extavia is a shot that you take every other day.  It is one that is just below the skin so it isn’t as bad as the Avonex but I found that while I was on Betaseron that they hurt worse and I bruised more with them.  This type has a self inject thing so I “could” give it myself but I would sit there for hours debating with myself to push the button and I never could so in the end someone would have to push the button for me.  I always struggled with giving myself a shot.  I had the same reactions as I did with Avonex except this was more often so I ended up feeling like crap all the time.

I never took Rebif but it is given three days a week.  It is the same type of shot that Betaseron is.  I would assume it has the same side effects as the other ones do.  The reason I never took this one is after Betaseron I decided until something new came out that wasn’t an interferon I wasn’t going to treat my MS.  I would never recommend this to anyone.  It was right for me but it isn’t right for everyone.  I finally found a doctor that was and is willing to work with me and listen to me. 

Next week I will take about Copaxone which is one that I have taken as well!  I hope this will help people.  If you have any questions feel free to leave a comment and I will get back to you or write a post about it in the coming weeks!

New Design & My Latest Infusion

As you should have noticed I got a new design from Jacqui!  I love this one and may keep it longer than the last one lol.  I am finding I get bored easily and love to have new blog designs.  I need to leave it along for awhile because I can’t afford to keep changing it every few months.  So this one will stay for awhile!

I had my infusion on Friday and it went pretty well.  I didn’t take the Benadryl that I usually take because I wanted to see if I could get along with out it.  I am happy to say that I didn’t need it this time.  I did get a headache but that is pretty normal.  The one thing I did notice about this infusion is I was super tired after it.  I hate how I am tired for a few days after and then come Monday or Tuesday I am good to go.  Oh well if that is one of the only things I have to complain about I will deal with it because I am starting to feel better after them again.  It has taken a few months to get back to where I feel better after them.  Now I need to start walking after work so I can lose all the weight I have put on these past few months because I haven’t been able to do much because I was so tired. 

I hope everyone has a great Monday!  I may be missing for a few days because work is super busy for me right now.  I had tons of work left on Thursday and since I am off this coming Friday as well I need to get totally caught up!  Wish me luck!

MS Tuesdays

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.  

Tuesday’s MS Post & A List Post(Day 2)

Day 2’s assignment is to write a post that has a list in it.  This shouldn’t be too hard because I love to use lists in my post.  They are easy to make and a good way to talk about things because that is how my brain works.  I am going to do this one today because I already need to use a list in this post.  Today’s topic on Multiple Sclerosis is the different types of MS.  I don’t think people realize that there are different types.  I am going to name them and then go into a little bit of detail on them.

  • Relapsing/Remitting MS– This is the type that I have.  This type is called this because it comes and goes.  You get better but most of the time not all the way better.  This is why I have some days that are worse than others or I will get super sick but over time I will get “better”.  A great example of this is when my hands when numb and I couldn’t use them but over time they have become so I can use them but they still tingle.  They feel like they are sleep and just about to wake up all the time.  Most people that are diagnosed with this type when they are in their 20’s or 30’s but like me you can be diagnosed with this type when you are younger or older as well.  I think this is one of the most common types of MS.
  • Secondary Progressive MS-This type is when people that had the previous type of MS start to just get progressively worse and don’t get better.  They say that after you have R/R MS for 10 years that the rate of developing this type is 50% higher than before and if you make it to 25 to 30 years the rate goes up to 90%.  I didn’t know this about this type and to be honest with everyone it totally scares the hell out of me!
  • Progressive Relapsing MS– This type of MS gets worse from the beginning.  They may or may not get a little bit better but they are always going to just get worse.  You may get better after the first attack but in between episodes you will keep getting progressively worse.
  • Primary Progressive MS-With this type you are always getting worse and there is no real let up of the disease.  You may have periods where you seem stable but you will never get better.  You are more likely to be diagnosed with this type of MS when you are in your 30’s or 40’s.  This type also attacks the spinal cord more than the brain.  People with this type are less likely to have problems with thinking than people that have the first two types.

Writing this post has also helped me out.  I have learned a lot while I was reading articles for this post.  I thought I knew all about what MS but I guess I still have tons of things to learn as well.  If you have anything you would like to know more about please let me know!
I got the information for this post primarily from: http://neurology.health-cares.net/multiple-sclerosis-types.php

My Poor Knee’s

I am going to be starting again where I left off when it comes to the 30 days of truth.  I haven’t done it in a few days but I am getting back on the bandwagon but today I am going to post pictures of what happened yesterday when my legs decided to stop working and I fell.

Those are the best pictures but lets just say they are killing me and so sore.  I had a hard time sleeping because every time I would turn over or the blanket would rub up against it I would wake up.  The left one is super swollen and is the most painful.  The MS makes my legs just give out and stop working.  A lot of people with MS use wheel chairs because you never know when your legs are going to stopping working.  To top it all off I ruined my favorite pair of jeans!!!!!!!