Protected: March 2017 – Multiple Sclerosis Update

This content is password protected. To view it please enter your password below:

Digiprove sealCopyright secured by Digiprove © 2017 Margaret Margaret

8 Years On Tysabri – MS Tuesday

MS

On my birthday of this year, I will have been on Tysabri for eight years. It is so hard for me to wrap my mind around that because at times it seems like I just started yesterday. I also look back, and I see how far I have come and how much I have learned about the healthcare system in this country. I also have learned the most drug companies have programs to make medications cheaper and that give them to you for free.

As I sit here and think about the first infusion that I ever I had I am amazed that I am a still taking this medication. I had an atrocious reaction to the first treatment so I wasn’t sure if I would be able to stay on it not to mention how much money it costs every month. I don’t know that I ever wrote about what happened the very first time I got the medication, so I am going to add it to my list of things to share.

I have to wonder what my life would be like if I hadn’t started Tysabri and if I wasn’t on any treatment. I have been stable the entire time I have been on the medication which for me is a huge deal. Since I have been diagnosed the MS was never stable but like I said it has been for eight years.

It also has given me my life back. Okay not given me my life back because I have no idea what it would feel like to be a normal functioning person but it makes me feel like I can anything I want to do. I still have hard days, but I don’t want to know how much different things would be if I didn’t have this medication.

Those are just a few of the thoughts I have about having been on Tysabri for eight years. I will be back with a small MS update in the next few weeks as well. Let me know if there is anything you would like to know about as well.

Digiprove sealCopyright secured by Digiprove © 2016 Margaret Margaret

Multiple Sclerosis Update-March 2016

MS Update-March 2016 N

I had my infusion, and I also saw my Multiple Sclerosis doctor on Monday, March 21st, so I figured that now was a good time to post a small update on how things are going and how I am feeling.

If I am going to be a one hundred percent honest with everyone I have to admit that I have been feeling pretty sick most days for the past couple of months.  Which has made my life harder but is part if the game when you have diseases like Multiple Sclerosis.  The last time I saw my doctor was back in December before I switched jobs and insurance companies.  I am sure the new job along with the stress of it is part of the problem.

I also have been feeling like I going to have a relapse soon because of some strange things that I have been feeling for the past couple of weeks.  I remember one morning a couple of weeks ago that as I stood up to turn off my alarm my legs gave out. After I had sat back down for a few minutes, I was able to walk, but my legs did feel weak. I also have also had times where out of nowhere I feel like my legs may give out on me.  They haven’t thanked God, but it is such a strange feeling to feel your legs get weak and then have it go away after a few minutes.

Nothing was changed at my doctor’s appointment which I guess is a good thing. The only thing that she did was to schedule my next MRI for the 2nd of April, so I have that to look forward too. So other than all that my life has been pretty stable which is always a good thing. I hope you are all doing well, and I hope to see you back here tomorrow for another book review.

Digiprove sealCopyright secured by Digiprove © 2016 Margaret Margaret

MS Tuesday: MRI & Treatment Updates

MS

I had another doctor’s appointment last week so I figured it was time to updated on what is going on with the MS and things like that.  The MS has been pretty stable since my last appointment in June which is a great thing.   I am so grateful for that but with that being said because of the stress that is going on with my job right now my Psorisis has flaired up which is more embarrassing than anything else.

After I get my new health insurance at the start of next year I am going to look more into maybe switching treatments because I have decided that I am not going to tell my new employer about me having MS from the start.  It always hard to figure out when to tell your employer that you have MS because you never know how it will go.  I know in time I will tell them but I want to wait until I they see how hard I work and things like that.

Anyway other than my headaches coming back not much has really change for me which is a great thing considering how active my disease used to be.  I am happy that I am stable and I hope it stays that way because I don’t have the time to have a relapse considering that I have to start a new job on January 4th.  So that is all that is going on with me.  I will see you tomorrow with a book review.

Digiprove sealCopyright secured by Digiprove © 2015 Margaret Margaret

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???

Digiprove sealCopyright secured by Digiprove © 2015 Margaret Margaret

MS Tuesday-Pissed Off

MS

I am not sure where this post is going to take us because I just have been feeling pissed off at this stupid disease and it makes us go through.  I guess what I am really pissed off about is any invisible illness that makes our lives so hard.  I have been dealing with this for years and for the most part I don’t let myself get upset about the disease but lately I am just pissed off.

I am so tired of not knowing what any day is going to bring and how I am going to feel any given day.  It is hard to try and keep going every day when I have no idea what is going to happen that day.  I know that no one knows what will happen any given day but when you never know if it will be a good day or a bad day because of the MS it gets hard.

It just pisses me off that I am having more bad days than good days anymore.  I don’t know that there is anything that can be done so I just need to accept things as they are and stop being pissed off at the disease.  I know this will come in time but right now I just want to be pissed off even though I know it won’t solve anything.  I hope that this phase passes soon because it is no fun for me and it isn’t fun for the people who I snap at because I am so frustrated with everything right now.  Anyway that is all I have for today.

How are you doing?

Digiprove sealCopyright secured by Digiprove © 2015 Margaret Margaret

Weekly Wrap-Up

Weekly Wrap-Up

Welcome to another weekly wrap-up post.  I only had two other post this week.  I just got busy at work and didn’t have the time to write the other posts that I had planned for this week so I am hoping to get to them in next couple of weeks.  One post that I had planned was an adoption thoughts post about how I feel guilty because of my genetics and a condition that I passed on to my daughter.  I also was going to do a post totally made up of pictures of my day because I thought that would be super fun but I didn’t get around to take pictures so that post will also be coming up in the next few weeks.

  • This weeks quote is by Ellen Glasgow and it is about growth and moving forward in life.  I really loved it so if you missed it you can click here to read it and let me know what you think of it.
  • The other post this week was an MS Tuesday post where I updated on what has been going on with me lately in regards to the MS and my eye site.  If you want to check that out you can click here and check out that update.

This week I saw this picture on Facebook and I loved it:

10997108_10205186404931432_1995486896_n

This is how I feel most days at work because the people I work with don’t understand MS and how it can affect me from day to day.  Next week I have 3 book reviews coming up and a few other posts.  I hope you all had a great week and I will see you back here next week.

Digiprove sealCopyright secured by Digiprove © 2015 Margaret Margaret

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

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

MS Tuesday Multiple Sclerosis Hug

MS

I haven’t posted about Multiple Sclerosis for awhile because I really haven’t had anything new to write about but the past few weeks I have been experiencing what people call the Multiple Sclerosis Hug.  The first time I heard about it was a few months ago and now that I have researched it I think it may be what some of back pain has actually been this whole time.

Anyway lets get to what the MS Hug is a “band-like” sensation that feels like a tight strap or girdle wrapped around the torso area.  This is the best description of it I could find.  I have looked high and low for more information on this and anything else I could find about it and I am having no luck.  Which I am finding to be a pretty common this when it comes to some of the symptoms that I have been having as of lately.

That being said those that know about the medication I am on might worry that it could be a serious side effect of the medication I am taking and I can assure you it isn’t that.  I have felt these ways for years I just never put everything together.  I should have figured it all had something to do with the MS but since they come and go I usually forget about it after they pass.

I couldn’t really find any statistics on how often it happens but one site did say up to 75% of will experience pain but they don’t have one for how many people experience the MS Hug.  They say it cause by a lesion on the spinal cord that affects the muscles between your ribs.

I haven’t talked with my doctor about this yet  but I will be talking to her at the end of the month after I have an MRI so I will see what she recommends when it comes to treatment and things like that.  I did see there are a few medications you can take to try and help with it but I don’t think I will do anything for mine at this point because it does come and go.  Now if it ever sticks around for awhile I will for sure figure out some treatment options.

Is there anything you would like to know more about?  If so please leave a comment and I will write about it in the next few weeks!

Digiprove sealCopyright secured by Digiprove © 2013 Margaret Margaret