It has been quite awhile since I have written and update about Multiple Sclerosis and what has been going with that. I had an MRI at the end of August and it showed that I am still 100% stable which is amazing for me. The MS has always been very active in me so that fact that I have been stable for about 4 years or so now is huge for me. I know it has everything to do with the Tysabri and that makes it all worth it for me.
While I was at my doctors appointment she asked me is I wanted to get tested for the JC virus, which for those people who don’t know it is what cause people on Tysabri to get PML. I told her no because I won’t stop taking Tysabri so I really don’t want to worry about it if I do have the JC virus. She did tell me that if and when I do have another relapse I will have to get the test done to rule out that I haven’t developed PML. My chances of developing it now that I have been on it for about 4 years is really low so I am not worrying about it all.
Other than that there hasn’t been any changes. I still have ups and downs when it comes to how I feel and things like that but that is pretty normal. So there isn’t much else I can say. I am stable and doing pretty well.
I am going to talk about depression and anxiety which are two Multiple Sclerosis symptoms that have be living with for the past couple of years. Growing up never had an issue with anxiety and what issue I did have with depression I was able to control and I didn’t have to take medication for it.
About two years ago I had to get on medication for depression because I literally could barely function at work and I was always on edge. After I started the medication it helped but I noticed I could no longer handle things that I used to love to do.
For example I have always loved being alone. My grandparents went on a cruise for 10 days last month and I was so anxious because I was home alone most of the time. The day after they left I literally sat in my room because I was so anxious. I also found myself checking the door locks a hundred times where as when they are home I never check them unless I have to get up and let one of the cats in.
I believe that in my case my depression and anxiety are cause by the MS. I know that not everyone with MS will have both of these symptoms and that some people who have these symptoms but not have MS.
Before I started on Tysabri when I would have MRI’s to check and see what the disease was doing I always had active lesions but I rarely had any symptoms. I believe that while I at the time didn’t show any outward symptoms that those active lesions are what caused my anxiety and depression issues that I currently struggle with.
Right now I take Zoloft for the depression and I don’t treat the anxiety because I have learned how to talk myself through it. I also have found that removing myself from the situation that is causing the anxiety is a great way for me to cope with it as well.
I received the book called “It’s Not All in Your Head: Anxiety, Depression, Mood Swings, and Multiple Sclerosis” by Patricia Farrell. I can’t remember the site where I was signed up and got the book for free but from the little bit of it that I have read it can’t wait to read more of it.
I would recommend the book to anyone with MS or anyone that has a family member or friend with MS. Once I am finished with it I will for sure write a review and I think I will give it away to someone with MS.
In the end I want people to know that is you have developed anxiety or depression that you aren’t alone and don’t be afraid to ask for help. At first it was hard for me to ask the doctor about it and start the medication but the more I learn about MS and what it can cause I understand why I have had to go on medication.
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.
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!
***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.
It has been quite awhile since I have written and update about Multiple Sclerosis and what has been going with that. I had an MRI at the end of August and it showed that I am still 100% stable which is amazing for me. The MS has always been very active in me so that fact that I have been stable for about 4 years or so now is huge for me. I know it has everything to do with the Tysabri and that makes it all worth it for me.
