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Multiple Sclerosis Update

11 Oct
Written By

It has been a long time since I have written a post about Multiple Sclerosis and I really want to keep everyone in loop on what is going on with my health and all that fun stuff. Most of you know that I have an infusion once a month for my MS treatment. I take a medication that is called Tysabri. It is super expensive and can be dangerous but that is going to be another post. I was supposed to receive my infusion on the 23rd of September. That didn’t end up happening because the company I work for changed health insurance companies and I had to wait for a preauthorization to come through before I could get my treatment. So I show up on the 23rd and they send me home because of the whole insurance issue. For those that know a little bit about my job and what has been happening the the last 4 months or so you know that I can only take one day off a month because they have no one to cover the phones since they let go Misti who used to be my boss. So I knew I was going to have to wait a few weeks before I could take time off to go in and get the treatment once they got the approval that they needed.

My next infusion is on the 21st of October, which means that I have missed a whole month. Let me just tell everyone I have no idea how I used to live like this because I feel like crap. I always knew Tysabri was helping but I had no idea that it was helping so much. For the last 6 months or so I have had headaches and I also haven’t been in pain. Well since missing one month I hurt I have headaches and am exhausted. I literally slept almost all of Saturday because I was so exhausted from a normal week of work. I had to call my doctor and have her call in more pain pills because I was out and hadn’t need them so I didn’t bother getting a refill when I saw her last time. I feel so bad for people with MS that fill like this all the time. I am so glad that I have found an MS treatment that works for me and allows me to be a somewhat normal 26 year old. Also my hands are super numb right now and I am not sure if that is because I missed my treatment or just how the disease is acting right now.

I can’t remember if I wrote about my last MRI and doctor’s appointment so I am going to do a quick recap of all that information. I had my latest MRI in August and also saw the doctor after the results came in. According to the scan I am still stable and have been for about 2 years or so. They haven’t scanned my neck in a few years so when I go for my next MRI in February they are going to scan my brain and neck areas which means that it will be a super long and super expensive scan. I am interested to see if there have been any changes in the neck area. If there hasn’t been any changes that means I have been stable but if there are charges that means that I really haven’t been stable all this time. I hate the not knowing that goes along with having MS.

That is all there is for now. If anyone has any questions please leave them in the comments and I will answer them for you.
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New Design & My Latest Infusion

18 Oct
Written By

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!

Filed Under: INFUSION, Jacqui, MS, New Design, TYSABRI

My Latest Infusion

12 May
Written By

I had my latest infusion on Friday the 7th.  I went to a different place then were I went for this post.  This place was so much better.  It was even better than it was when I went to the hospital for them.  I slept this time which is the first time since I have been doing them that I have actually slept.  I slept for about an hour and it was much needed.  I would have been worried if I hadn’t slept because I had a lot of drugs in my system because I had a migraine when I went it and I had to take my Benadryl(sp) because of the reaction that I sometimes have to the Tysabri. It was really quiet and relaxing there.  This time the doctor didn’t make me talk to him about stupid stuff because he knew that I was there for the Tysabri and that I probably knew more about the drug and disease then he did. I am glad that I finally found a place that I like and that didn’t act put out that they had to help me.
This is a short post but there wasn’t much to say on the subject.  I hope everyone is having a great Wednesday.

Filed Under: INFUSION, TYSABRI

Utah Cancer Specialists In SLC. . . Totally Suck!!!!!

6 Apr
Written By

I am completely amazed at the lack of customer service that doctors offices now have.  I was totally amazed how I was treated at the place I had to go for my infusion today.  I have never been treated so badly before in my life.  This post may be long but I have to go into detail so you will all get the full effect.

I was already mad that I had to go and see one of their doctors but I got over it but because of how good the MRI was I knew I had to jump through the hoops they wanted me to do in order to get the infusions.  So after I sat in the waiting room for like 20 mins or so with everyone staring at me they took me back to a room.  On the way back they wanted to weigh me and get my height.  I am not going to give out the weight but lets just say that since I was lasted measured I have shrunk from 5’4″ to 5’3″!!!  What in the hell is up with that!!!!!!!  I thought you didn’t shrink until you where like 70 or so.  Guess by the time I am 70 I will be 1′ lol.  Anyways lets get back on track.  So they take me back to see one of their dumb doctors and lets just say she is a major bitch!  Her and I argued over what my car entailed.  Like I haven’t been doing this for months as it is. 

After I got done with her I went and waited for them to call me back into the infusion room which took another 20 mins or so.  Let me remind everyone that I still had to go back to work after this was all done at it was almost 11:30 at this point.  I was supposed to be back to work at around one and the infusion takes about 2 and a half hours.  Anyway when they took me back they put in the IV and then drew the labs they needed to do.  Usually at this point the hook up and medication right away and I don’t have to sit there are wait for the labs to come back.  Well even after telling the doctor I don’t have to wait they still made me sit there even long while they ran my labs! 

The nurse I had was a idiot that didn’t brush her teeth.  I love when nurses don’t listen to me when I say I don’t want something done.  The infusion in and of itself went really well which was good but the reaction I usually have during the infusion just happened later that night.  After I left there I called Tysabri and told them I won’t go back there and they need to find me a new place to go in order to get my infusion every month.

I guess what made me the maddest was the fact that they didn’t listen to me about my care and what I wanted done.  I hate when people in the medical field think I am a total idiot.  Hell if she didn’t believe me then she should have called my doctor and found out I was right!  The nurse was also not a nice person to me.  They all acted put out that I was there.  Like I really wanted to be there with a bunch of cancer patients.

23 Mar
Written By

Well I think an update on the MS is long over due.  For all of you that did read the post where told the results of my MRI I will post a quick recap to bring you all up to speed.  When I went in to see the doctor a few weeks ago she told me that  for the first time since I was diagnosed I was stable!  It is a great feeling to know that I was finally on the drug that was helping me.  So after she told me that she then told me I had to get over whatever my issue was with the new infusion center and go.  I was and am still mad about it  but I will do what they want me to do because this is the only thing that has worked for me.  My next infusion is on the 2nd of April.  I am hoping that all goes well with it because I have to go alone because of work and the fact that Grandma is going out of town that day.
I don’t think when I wrote my last that I really got into what the medication I am on does for MS and the bad condition it could cause.  I am on a drug called Tysabri that is administered once a month by an infusion.  An infusion is something similar to what they do when you are having chemo or getting a blood transfusion.  Tysabri was released in 2004 after that it was take off of the market because a few people developed PML or Progressive multifocal leukoencephalopathy.  This is a very rare viral brain condition that causes progressive inflammation of the white matter in the brain.  From what I was told this virus lives in the kidneys of people but most people without compromised immune systems can keep it under control and it causes no problems.  Tysabri works by attaching to the blood brain barrier and keeping the immune cells out of the brain.  So because the immune system can’t get up into the brain PML can take over.  There is currently no test to test for the virus.  They released the medication back on the market in 2006 with strict warnings and stipulations.  When I signed up to do this drug I had to sign a waiver saying that the FDA could look at my medical records at any point.
So far this is the only thing I have found to work.  I know the risk of PML greatly increases after you have been on the drug for two years and I am about at that point.  Today 31 0r 33 patients have gotten PML so that makes the odds about 2 in 1000 that you will get it.  For me the benefits still out weigh the risks.  That is a little bit about the drug that I am on let me know if you have any other questions about it!

http://theworldasiseeitbloganddesigns.com/well-i-think-update-on-ms-is-long-over/

Filed Under: INFUSION, MS, Pml, TYSABRI

Idiots Are Taking Over!!!!

11 Mar
Written By

So I was told at the doctors that I need to get in and get my infusion done as soon as possible so that I don’t get sick and I stay stable.  So I had grandma call because I am at work and don’t have time to hold on the phone with places.  Once they finally called her back they said that they now needed all my records from Julia’s office.  When she told me this I just about lost it because I was just there yesterday why in the hell didn’t they tell me this when I was calling them last week. 
I guess Julia’s nurse called my grandma back and said if we don’t hear from them tomorrow that we should call Monday and she also gave us a name of someone to talk too.   I am just so tired of getting the run around from this infusion place.  It can’t really be that hard to do you job can it?  Hell I think I could do their job better than they could.  This is the worst place yet that I have ever had to work with.  Even the insurance company’s are easier to work with and that is sad.
I am hoping I will get my infusion in the week or so.  Keep your fingers crossed for me!

Fursday’s With Elinore & Sylvia. . . But First An Update On The MS

11 Mar
Written By

It is Fursday and that means it is time for me and Sylvia to post our thoughts and rants on what mom and the rest of the humans have been doing.
This is Sylvia speaking.  I was ready to kill mom the other night because she kept bugging me when I tried to sleep.  How hard is it for her to get that when I am sleeping I expect to be left alone!  I guess mom is “slow” because she doesn’t seem to get the fact that when I hiss at her that I don’t want to be bugged.  Last time I checked I thought it was pretty straight forward but maybe I am just smarter than the humans are.  Oh well at least they feed me and the gray haired man plays with me all the time.  I even get to supervise him while he is working outside in my yard.  It is a great life!
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I had my doctors appointment yesterday to get the results of my MRI that I had in February.  Well right when she saw me I got a lecture and was basically told to get over the issues with the new infusion site and go.  I asked her about what the MRI I had said and for the first time since I have been diagnosed I am totally stable.  There were no new lesions on my brain!!!!!!!!!!!!!!!!!!!!!!  This is huge for me because I have always had a very active disease and I always have had new lesions.  So after hearing that I am going to suck it up and do what I have to do to stay on the medication.  Even if that means jumping through hoops for the stupid drug company.

Me & The MS

11 Feb
Written By

This post has been harder for me to write than when I posted Brita’s 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.   


Filed Under: DEPRESSED, Doctors, MS, SICK, TYSABRI

FYI About Multiple Sclerosis

4 Feb
Written By

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.



That is all I can think to tell you.  If you have any questions please feel free to ask them and I will answer them all in another post.  I hope this will help everyone understand my story a little bit better.  I am going to post my story next Thursday.  So if you have any questions please ask so everything will be clear to you when I post my story.

Tuesdays Note

2 Feb
Written By

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