MS

MS Tuesday-Update On Me

MS

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?

Digiprove sealCopyright secured by Digiprove © 2015 Margaret Margaret

Multiple Sclerosis Tuesday-Updated Treatments Post

MS

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)
http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/basics/treatment/con-20026689 (new treatments info)
Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

MS Tuesday-Latest MRI & Update

MSI 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!

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

Something I Learned Last Month

Some Thing I Learned Last MonthThis week for the writer’s workshop I am going to write about something that I learned the last month.  I learned a few things but the one thing that sticks out to me is that ALS sucks.  I knew about ALS before the ice bucket challenge blew up but I really didn’t want to think about it because even before I looked into it more it still scared me.  I had the honor when I worked at a nursing home to take care of a patient for a couple of weeks who had ALS and that was the first time I knew anything about the disease.

Since the ice bucket challenge has been so big I wanted to know more about the disease and it truly scared me.  It is the one disease that makes me glad to have Multiple Sclerosis.  I mean it does still suck to have MS but in the grand scheme of things and problems that I could have MS is nothing.  I am so thankful that there are at least treatments that slow if not stop the progression of the MS so that I can hopefully have a great life and not end up in a wheel chair.

I can even imagine how scary it has to be to know what is going to happen and know that there isn’t anything or anyone who can stop it or even slow down the progression of the disease.  Not to mention what happens to you when you have ALS scares me as well because I think one of the scariest parts of the disease is to be all their cognitively but not being able to move or communicate with everyone around you.

I found a YouTube channel made by someone who is only 26 and was diagnosed with ALS.  It is even scarier for him because his grandma & his mom have/had the disease so he knows what he will be going through and like I have said throughout this whole post I can’t even imagine how scary that has to be.  If you want to check out his channel you can click here.

So that is the biggest thing I learned the last month.  What have you learned???

 

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

Multiple Sclerosis Tuesday-My Current Thoughts & An Update

MS

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.

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

Summertime & Multiple Sclerosis

Summertime

I am going to write about what summertime is like for me having Multiple Sclerosis (MS).  For those that are new or don’t know I live in Utah so it does get hot here in the summer and super cold in the wintertime.  We usually get into the upper 90’s slash low 100’s during the months of July & August and sometimes it can hot earlier than that.

Anyways now back to the topic at hand.  Those of us that have MS don’t do well in the heat.  The heat makes any MS symptoms we may be suffering from even worse than they usually are.  We also get super weak so we have to try and avoid overheating.    In this post I am going to give you some tips that I use when I am out shopping or at work to try and stay cool during the summer months.

The first thing  I do during the summer is try and not go out in the afternoon or early evening because that is when it is the hottest.  If I have shopping to do I try and get it done first thing in the morning so that I am not out during the hottest parts of the day.

The second thing that I do when I have to go out during the afternoon is try and park and close to the building so that I do not have to walk super far.  If I am with someone else and they are driving I will try and have them drop me off at the door and avoid walking through the parking lot.

The third thing I do is keep ice packs in the freezer so that when I am leaving work in the afternoons I can have it to keep myself cool.  My grandma thought of this one and I have to say that I loved it.  The exterior and interior of my car is dark in color so the inside of my car is always super hot after it has been sitting out all day so having an ice pack to put behind my neck while I am driving is a great way to keep my cool until my air conditioning in my car to cool the car down.

The forth thing that I do is leave my sun roof & windows cracked so that there is some air flow through the car.  This one can’t be done all the time because of the wind and things like that but I do try and do this one everyday because it also helps keep the inside of my car cooler on the super hot days.

Those are the top 4 tips I have for keeping cool in the summertime.  If you do anything different please let me know because I am always looking for other things to try.   Also if there is something about MS that you would like to know please let me know in the comments and I will make sure to write another post about it in the future.

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret