INFUSION

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!

Idiots Are Taking Over!!!!

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

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.

FYI About Multiple Sclerosis

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.