This week for my MS post I am going to post about a experience I had this weekend. It was Governor’s day. This is basically where the national guard units in Utah get inspected by the Governor. They turn into into a family thing. My Grandma and I decided that we were going to go and support my little brother. He had to be there by 8 so we left the house about 7. When we got there we had to park far away and hike down to where it was going to be held. We went and got seats and had to wait until 10 for it to start. At about 9 there was no more shade so I was sitting in the sun. I didn’t think it was going to be a big deal though so I didn’t move and go and go stand where there was some shade. After it was over and we found my brother we had the hike back to the car. This is where the trouble started. It was maybe a mile hike up hill in the heat. By the time we made it to the car I was totally whipped out. The heat made the MS 10 x worse than what is usually is. I then spent rest of Saturday and all day Sunday in bed. I am still warn out.
When people with MS are in the heat it causes what is called “pseudoexacerbation”. This basically you seem to be getting sick but there isn’t any new damage being done to your nerves. I seems like you are having a relapse but your body is just reacting to the heat. When your body temperature returns to normal what you where feeling should go away. Here are a few symtoms that people may feel when they get to hot.
For some people this can be so sever that people have to move to cooler climates so that they aren’t constantly sick from the heat. What people may feel varies from person to person though. If you have any questions please let me know! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ This is the site I got the information for this post from: http://ms.about.com/od/signssymptoms/a/heat_intoleranc.htm
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. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
This week is invisible illness week. I have a chronic but invisible illness. People that don’t know me tend to think I am just lazy or a bitch. I wish that people would take the time to get to know me before they judge me. If you don’t have an invisible illness you don’t know what it feels like for people to not understand that there is a reason I am like I am. Here are some stats that will shock you. I know they did me!
Nearly 1 in 2 Americans (133 million) has a chronic condition
96% of them live with an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy.
That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million. Chronic Care in America
Sixty percent of the chronically ill are between the ages of 18 and 64.
The divorce rate among the chronically ill is over 75 percent
There are so many different types of invisible illness. This week I am having some great guest posters post about their invisible illnesses. I will post my story on Tuesday and then the other days I will have some amazing women post about their struggles with their invisible but chronic illnesses. I hope everyone can learn from these lady’s and be a little more excepting of others!
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
I have decided that I am going to discuss MS on Tuesdays now because I have had interested in telling more and educating people. Please tell me what you would like to know more about and things like that. This week I am going to do a post about Vitamin D because it seems to be the big topic this week.
I follow a blog and he wrote a really good post about it. I have heard this before but it seems like the drug companies don’t want to hear about it so it get silenced pretty quickly. They are starting to see that people with MS are usually low in the Vitamin D. They are saying that we should take more than the recommended 200 IU that they recommend. Now that scares me because I do know that if you take to much Vitamin D it can be toxic because it is stored in your fat. They say that you can’t get to much Vit. D if you are out in the sun. One MS doctor told me that he thinks sitting in the sun for 20 minutes a day is better for you than taking the pills. They say that taking 1000 IU a day of Vitamin D will also help protect you against cancers.
There is a higher occurrence of MS in states like Utah and other places where we have winters without much sunlight. They are starting to see that people that live in places like that should be taking Vitamin D during the winter and even in the summer if you don’t go outside very much. I also read an article when I was reading things for this post that says smoking makes you have between a 30-80% chance of getting MS. I can’t help but wonder if my parents smoking when I was little didn’t have something to do with me developing MS.
That is all I have this today. Like I said in the beginning please let me know what you would like to know more about. I will be trying to do this every Tuesday. I hope this will be helpful and maybe I can help someone. Have a great day.
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.
