This week’s MS Tuesday post is going to be an update to my post where I talk about the treatments there are for Multiple Sclerosis. If you want to check out the original post you can click here but I am going to copy and paste the old post and updated it with the new treatments that have come out since that post was originally published.
I am going to do a small overview of the different Multiple Sclerosis medications out there right now. I want to start by saying that there is no cure of MS right now. There are a few medications that will hopefully slow the progression on the disease.
The first group of drugs are called Immune modulating drugs. They work by keeping the immune cells from interacting with other cells. This group consists of 3 different drugs they are called Betaseron, Rebif, and Avonex. There is one other drug that is under this type of medication and it is Copaxone. This one is made of amino acids and works differently than the interferon’s.
There is Tysabri that attaches itself to the blood brain barrier and doesn’t let immune cells into the brain. There are several other treatments such as: Novantrone, Cytoxan, Imuran, Rheumatrex, and Trexall. All of those treatments are drugs that will suppress the immune system.
Since I posted the original post they have come out with several pill’s that you can now take. Before you had to have shots and/or an infusion so coming out with pills was huge for people who have MS. The names of the pills are: Gilenya, Tecfidera and Aubagio. I don’t know much about the new drugs out because right now Tysabri is still working for me so I am not in a hurry to try any new medication right now.
They will sometimes give a person steroid treatment if they are having an MS flare up or relapse. I have been given steroids several times and I will always refuse them now. I don’t think they really didn’t anything but make me gain weight and make my eyes see funny colors. I can see why they do them but I would rather have some disability than deal with the side effects of the drugs.
I have taken several different MS medications and if you would like to know which ones I have taken and how they affected me please let me know. There are also medications that we are given to help manage side effects of medications and also to deal with how the disease affects each of us as well. If you would like to know anything else please let me know!
I had an MRI the last Saturday in August and I just had my 6 month appointment with my doctor so I wanted to write a quick update. I am sure most people aren’t really interested in these updates but I want to be able to look back later and see what has changed and this is the easiest way to record how things are now.
Anyway let’s get on to how things are for me now. For the most part things are okay. I mean I don’t feel good hardly ever but I am starting to think that this is my new normal and because of that I am not going to really complain about it. I know things could be so much worse for me so I am trying to stay positive about everything.
My latest MRI showed that I am still stable and there are no signs that I am developing PML so I can still stay on the Tysabri. Which for me is a great thing because it is the only thing that has ever kept me stable so for me it does work and I don’t know what I would do if I had to stop taking it. I know that there are pills out now but they are still so knew that I don’t want to start on them until they have been out longer.
This is also the first appointment in years where we didn’t change any medications and we just are going to keep doing what we are doing and see what happens in the next few months. The only real change is the fact that my doctor wants to start seeing me every three months now instead of every 6 months which isn’t a huge problem just more time-consuming is all.
So all is all I am still stable and nothing much is really going on so I can’t really complain about things now. I have the MS Hug happen a few times in the past couple of weeks but it is hard to say that is what it is when it could also be my back injury so who knows about that.
If you have any questions or requests for something you would like to see please leave them in comments!
It is time for another MS Tuesday post. I haven’t done one of these in a while because I haven’t had anything to talk about when it comes to my Multiple Sclerosis (MS). Like I have said before if there is ever anything you want to see in one of these posts please let me know and I would be more than happy to write about it.
Anyway today I am going to write about a weird feeling I had the last week. I am not sure if I have ever written about the very first MS symptom that I had but this post will ties into that. The first symptom that I know was the MS was when I was in high school and my left leg started to drag at random times and it just wouldn’t work. I can remember going to see doctors about this and everyone thinking we were making it up but long story short this was the first time I realized that something was wrong.
So last week I had a really weird feeling in my left leg. The best way I can describe it is by saying it felt like it was going to give out while I was walking. I haven’t felt anything like that before and I hope I don’t ever have to feel it again. My leg never did give out but it felt like it could at any moment. As I write it down I guess a better way to describe it would be weakness in my leg.
The medication that I take for the MS can cause you to get a condition called PML and the signs of that can seem like an MS relapse. So my doctor tells me that if I have any weird things going on that last for more than a day to call her and they will get me in to make sure that I am not getting PML. Thank god the feeling was gone by the next morning so I can just chalk it up to a random MS symptom. I am for sure going to tell her about when I see her in September after the MRI I have scheduled at the end of August.
Other than that I have been totally stable and haven’t had anything other than the headaches but I have had them for as long as I can remember so I forget most of the time that they are even there.
How have you been doing? Is there anything about MS you would like to know?
This time for things that drive me insane I am going to talk about my latest infusion and how bad one of the nurses there was. The thing that made me the maddest about the whole situation was the fact that she was a supervisor. Anyway lets get onto the story. I am sure you all know that I have Multiple Sclerosis and that I take Tysabri once a month to keep me stable.
So once a month I go to the hospital and get an IV in my arm so I can get the medication. The best way to describe how the give it is to say they give it like they do Chemo or when you have a blood transfusion. So usually they get the IV started with just one poke but this time it took 3 times.
Now if the only problem was that I took three times to get the IV started I wouldn’t be so pissed about it but the second time they poked me it hurt like hell and here I will show you a picture of the bruise that formed:
This was taken 5 minutes or so after I got home from getting my infusion done.
This bruise was already forming before she pulled out the needle because she couldn’t find the vein. I don’t think I have ever had a nurse dig around so much trying to get the vein. She was digging around for a good 2 to 3 minutes and still couldn’t get it. She then had to poke me for the 3rd time and thank god she got me then because if she hadn’t I wouldn’t have let her poke me again.
Here is what the bruise looked about 4 or 5 days latter:
What the hell is up with the straight lines????
Let me just tell you I have never once seen a bruise like this. The fact that there are straight lines is so weird and everyone that see’s it says the same thing. I ended up having to go to the hospital and get blood drawn because she messed up and my blood test came back weird so they want to make sure that it everything was okay. Oh and this bruise still hurts and I bet even when the bruise goes away I will still have pain because I believe she went into the muscle and did some damage.
I pray to god that when I go back for my next infusion that she won’t be there because I hate making scenes but there is no way in hell that she is ever going to get another needle anywhere near me. I have another Idiot Drivers coming up next week.
Yesterday I wanted to write about something that gave me a headache for the Writers Workshop but I already had a book review that had to be posted that day so I figured I would post this today. I wanted to write about this because I have had a headache for a month now in fact we are coming up on 2 months with the same headache. I can’t blame this headache on just one thing so I am going to make a list of things that I think are causing it.
The weather has been super crazy lately and it is always changing.
The fact that since it has been warmer some days my cats have started to shed and I am allergic to them. (This one is my own fault and I know it but they are my kids so I won’t get rid of them)
We are putting in new flooring in the living room, dining room & hallway. My girls usually sleep on the couch and chair in the living room but since it has been torn up they have been sleeping on my bed almost all night so that is putting tons more cat hair and what not in my room.
My Multiple Sclerosis medication can cause sinus infections and I am prone to have them as well. I am pretty sure I have a sinus infection but I know that going to a doctor for it isn’t going to do anything so I just take decongestants and wait it out.
Stress from work has also be huge problem lately as well.
I also have been eating too much gluten and I am paying for it big time. I will do really well some days and then other days and weeks all I want to eat is things that have gluten in them. I am being kind of stubborn and still eating things I know that will make my head hurt but I am tired of not having what I enjoy.
The final thing that has been giving me a headache is all of the reading that I have had to be doing because of all the book reviews that I have coming up in the next two months or so.
Those are the things that are causing this almost 2 month-long headache. I know there are probably tons of other things that aren’t helping as well.