I recently had an MRI and I also have something going on with my eyes that I wanted to document so that if I needed too I would be able to remember when it first started. First I am going to talk about what is going on with my sight and then I will talk about what the MRI showed along with my thoughts on it all.
So I started noticing that I am getting major headaches for the past 6 months or so when I do a ton of reading. At first I just thought that it was because I needed to start wearing my glasses again so I figured I would go to the eye doctor and get an updated prescription and that I would be back to normal after that. When I went and saw my eye doctor he basically told me he wasn’t sure what was going on because he couldn’t get my vision to correct which is a huge change from what it used to be like. I was referred to see an opthamologist and I still haven’t made an appointment because I am waiting to talk with my neurologist about it first.
If I am being honest I was hoping that the MRI would show that the disease was active or that it had been active because I was hoping that whatever is going on with my eyes could go back to normal. The MRI showed that the disease is stable and that it hasn’t been active in over 6 years which I know is a great thing but I am not happy about it. Since the MS hasn’t been active I now have to go see another doctor about my eyes because the headaches I have been getting need to go.
When I was diagnosed with MS I never thought that I could go blind. I have come accept that I might end up not being able to walk but I am struggling with the fact that I could go blind. For me going blind would be the worst possible thing that could happen to me because I can’t imagine not being able to read books anymore. I know there are audio books and things like that but I love reading actual books and not being able to do that anymore makes me truly depressed.
Anyway that is the update for now. I will have a follow up post about my eyes after I see my neurologist and make the appointment with the opthamologist.
How are things going with you guys?
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!
The sites I used to get the information for this post from:
http://www.emedicinehealth.com/understanding_multiple_sclerosis_medications/page6_em.htm#inter (original site I used)
I thought I would so another Multiple Sclerosis Tuesday post this week. Instead of talking about anything in particular I would just write down some thoughts I have been having about MS and a little update on what is going on with me right now.
Lately I have hated the fact that diseases like MS even exist. I have gotten to know so many people that have auto-immune diseases and it just piss’s me off to know that god lets people suffer like we do. That being said I know it is in his plan for all of us and that he gave us these things because he knows we can handle them. I know that it is true but I often wonder if at times we aren’t given more than we can handle anyway that isn’t the point of this post.
I also have been wishing that people would stop judging those of us who have MS and think we are lazy because we can’t really do much. Now that being said I for the most part can keep up with anyone and if I don’t tell you I have MS right now you can’t tell. Even my own family thinks I am lazy because when I get home from work all I want to do it take my bath and go to bed. People don’t take the time to ask or even realize how much energy it takes for me to just make it through my work day.
As for an update on me nothing much has changed since my last update. I am back to getting my headaches almost every day again but I thinking that is just a part of the MS for me. Also my Psoriasis is back with a vengeance which totally sucks. It isn’t really the fact that it itch it find I am more embarrassed but it than anything else. I mean it does hurt if I find myself scratching it but other than that I can ignore it. I am glad that I wear a jacket all the time at work because it just makes me feel self conscious about myself.
That is all for this post. If there is anything at MS that you would like to know more about please let me know in the comments below and I will make sure I get it written for you.
I know I have written posts about this in the past but right now it is something that is bothering me again. I am so sick and tired of Multiple Sclerosis right now because I am tired of feeling like crap. Everytime I go to the doctors they are switching up medications to try and make me feel better but nothing ever works. I am just tired of everything that has to do with Multiple Sclerosis and just not feeling well.
I know my situation could always be worse which is why I don’t talk much about how I am feeling but I have reached a point where I need to write about how I feel so that I can at least get it out and off of my chest. I also know that in the world of MS I have been relatively lucky as far as the disease progression goes but like I said before I am just sick of the disease.
I am sick and tired of being sick and tired. I know there really isn’t anything people can do about this at this point but I still wanted to write this because I don’t know that I have ever read a blog where someone with MS was totally honest about how much the disease sucks. I know this will pass and I will get back to the point where the things just roll off of my back but right now I just want to bitch about it. I also want to let others know that it is okay to be pissed off about what the disease does to us.
I am also tired of people thinking I am lazy because after I get off work the only thing I want to do is go home and go to bed. I wish there was someway for me to explain to others how tired I get going to work everyday. I wish I could find something to give me more energy but as it stands everything I have tried just makes things worse. I know if I could sleep I wouldn’t be as tired but like usual my health insurance company sucks and they won’t fill the one medication that does help me sleep and I can’t afford the medication without it being covered.
Anyway I am just bitchy and sick and this is what happens when I feel like this for months on end. How are things going for you guys right now????
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.
If you have any questions please let me know!
It has been awhile since I posted an update on the MS and my life on this blog. Now I won’t post everything that is going on in my life right now because of the ex but I do post what I won’t post here on my private blog so if anyone wants to read it let me know and I will send you an invite to read it.
Anyway, now on to the update. The MS is being crazy again and I don’t think I am stable anymore. I have an MRI in August but this won’t be a true indicator of how I am doing because I was off of the medication for a few months while the drug company got there shit together and then again when the drug company didn’t send my drug on time so I was two weeks late. That is the one thing with the medication that I am on you have to take the same time every month or you risk flair ups and relapses. I have started to wish that people could live in my body for a week they would truly get what it was like to be me.
Brita’s birthday wasn’t as bad as I thought it would be because I had something to get excited about! The day after her birthday was my SITS day and I knew I would get tons of comment love and that the ladies would say things I needed to hear and not even realize it. So once again I want to thank everyone that stopped by and all my new followers for saying such nice things and saying things I needed to hear at that moment.