Today is the first day of the 30 days of truth and lets just say I am not excited about today’s topic. I could go on for days and days about things I hate about myself. I guess the main things that I hate about myself are my weight and being sick all the time. I know I can change the whole weight issue but I am trying and it doesn’t seem to get any better. I know I am not the most dedicated person when it comes to trying to lose the weight but the MS also plays a huge role in me not losing it. Which is why I hate being sick. I wish I could make the MS go away and be a normal 25 year old that isn’t worried about what tomorrow is going to be like.
It has been awhile since I posted an update on the MS and my life on this blog. Now I won’t post everything that is going on in my life right now because of the ex but I do post what I won’t post here on my private blog so if anyone wants to read it let me know and I will send you an invite to read it.
Anyway, now on to the update. The MS is being crazy again and I don’t think I am stable anymore. I have an MRI in August but this won’t be a true indicator of how I am doing because I was off of the medication for a few months while the drug company got there shit together and then again when the drug company didn’t send my drug on time so I was two weeks late. That is the one thing with the medication that I am on you have to take the same time every month or you risk flair ups and relapses. I have started to wish that people could live in my body for a week they would truly get what it was like to be me.
Brita’s birthday wasn’t as bad as I thought it would be because I had something to get excited about! The day after her birthday was my SITS day and I knew I would get tons of comment love and that the ladies would say things I needed to hear and not even realize it. So once again I want to thank everyone that stopped by and all my new followers for saying such nice things and saying things I needed to hear at that moment.
There really isn’t much left to say so I hope everyone is had a great weekend and has a great week!!!!!
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!
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.
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.
