A Small Multiple Sclerosis Update

MS Update-August 2016

I saw my neurologist on August first so I figured I would just write down how I have felt so that I have a record of it. Nothing changed when I saw her, but I haven’t felt good for months. I can’t remember the last time I felt this bad for as long as I have lately. I am sure it was like this before I started Tysabri, but I have been on it now for about seven years, so I don’t remember how I used to feel. I know part of it is the heat and another part I am sure is because of stress. I started a new job in January, so it has been an adjustment in that sense, and I just moved to a different part of the company, so I know have to learn all new stuff which can be stressful at times.

I have been having severe headaches lately, and my sleep has been the worst it has ever been. I only sleep for an hour or two a night which I know is also contributing to my headaches. I know that there is nothing that can be done to make me sleep better because I have yet to find a medication that will help me sleep, so I just have to make due. I am so glad that I have a job and insurance, so I can’t complain about the stress of everything. I know I will learn whatever I need to know soon enough, and the people that I am working with are so friendly and helpful.

I also feel like my eye site is getting worse, and I find that I am starting to read more digital books because I can make the font bigger, so I don’t have to strain my eyes as much. I have to schedule an MRI for October, so I have to wonder if the disease is still stable. Those the few things that I wanted to share so I will have another small update after I get my next MRI and once I have those results.

Digiprove sealCopyright secured by Digiprove © 2016 Margaret Margaret

My MS Meds

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.

Digiprove sealCopyright secured by Digiprove © 2012 Margaret Margaret

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