Updates: Doctors Appointment, Multiple Sclerosis, and Everything Else

Updates

I had a doctors appointment on Monday June 8th and I wanted to write a short update about that appointment and also an update about how I have been feeling lately.  I also decided as I was writing this post that I wanted to include just a general life update because  I am truly struggling with things right now.  I can’t tell everything that is bothering me but I will tell what I can and maybe I will still write what is going on and password protect those posts and if you want to check them out you can email me and I will give you the password for them.  Anyway lets get on to the MS update because that is the easiest and quickest part of this post.

As I said before I had a doctor’s appointment Monday afternoon with my neurologist.  I hadn’t had an MRI or anything since I saw her last but she does like to see me every so often because of the medication I am on and things like that.   I haven’t been feeling the greatest lately but there is nothing that can really be done about that because I just don’t feel well.  My headaches are getting bad again which totally sucks because I went so long without having them or at least not having super bads one.  I know that the reason I am having them is because of allergies and also just the stress of life.  I have an MRI in August and I don’t have to see the doctor again until December so that will be nice.

Now on to the life crap that I am willing or able to talk about.  I have no idea where to start or what I even want to say.  I guess the first place to start is with the fact that the daughter I placed for adoption will be 10 this year and I am honestly not sure where the time went.  It has also been a hard year this year when it comes to dealing with the adoption and I am not sure why this year has been so hard for me.

Another thing that has been hard for me this year is family things and usually I don’t really care what goes on with family members but this year that has changed for me.  What is funny about it all is that what I am sad about didn’t even happen this year and to be honest I am not sure why it is now bothers me like it is.  I am sure it is because of everything else going on that is making all the little things in life that usually don’t affect me hard for me to deal with right now.

Anyway that is all I can think of right now so I am going to leave it like this.

How are things going for you???

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Frustrated With Multiple Sclerosis

Frustrated With Multiple Sclerosis

I guess it is time that I write about what is going with me and the Multiple Sclerosis because I haven’t really done an update in a while.  If you were to look at my you wouldn’t be able to tell that anything is wrong with me because everything that is going on is on the inside or at least if I don’t tell you anything is wrong then you won’t know anything is wrong.

For the last 2 or 3 months I have been exhausted to say the least.  I wrote a post earlier this week about how I am not sleeping but this exhaustion is so much more than just not sleeping.  It is so hard for me to explain the difference between being tired because of lack of sleep or being exhausted because of the MS.  I don’t think there really is away for me to explain it other than saying I am so tired that if I could stop breathing I would because that takes more energy than I have.

I know that my lack of sleeping isn’t helping the situation any either so that gets to me as well.  I just feel like I am falling apart and we have no reason as to why I am feeling this way.  I had an MRI done at the end of August and when I went to get the results my scanned showed that the disease hadn’t been active in the last six months.  Which should be a great thing but I felt confused and pissed off by it.  I really wish the scan would have shown something so that there was some sort of reason for why I am feeling the way that I am.

After my last appointment  I started on a new medication and I have taken it for a month and haven’t seen any change in how I am feeling so I don’t know if it is working or not.  She did say that I could take it twice a day and I haven’t done that yet because I already take so many pills that I hate taking more but I think I am going to try to take it twice a day for a couple of weeks and see what happens.

It is so hard having something like MS because it sucks when you can’t figure out what is wrong in order to try to fix it.  I have to wonder if I am going to have an MS relapse soon because this is usually how you feel before you have one or it is at least how I have always felt before one.  As of now I am “stable” but I don’t think I truly am.  There has to be something going on and it just isn’t showing up on the MRI.  My next MRI is in February and I see my doctor again at the beginning of March so we will see what happens in the next few months.

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What Is Multiple Sclerosis


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!

Digiprove sealCopyright secured by Digiprove © 2012 Margaret Margaret

Me & The MS

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.