MS Tuesday – The World As I See It

Frustrated With Multiple Sclerosis

October 9, 2013

I guess it is time that I write about what is going with me and the Multiple Sclerosis because I haven’t really done an update in a while. If you were to look at my you wouldn’t be able to tell that anything is wrong with me because everything that is going on is on the inside or at least if I don’t tell you anything is wrong then you won’t know anything is wrong.

For the last 2 or 3 months I have been exhausted to say the least. I wrote a post earlier this week about how I am not sleeping but this exhaustion is so much more than just not sleeping. It is so hard for me to explain the difference between being tired because of lack of sleep or being exhausted because of the MS. I don’t think there really is away for me to explain it other than saying I am so tired that if I could stop breathing I would because that takes more energy than I have.

I know that my lack of sleeping isn’t helping the situation any either so that gets to me as well. I just feel like I am falling apart and we have no reason as to why I am feeling this way. I had an MRI done at the end of August and when I went to get the results my scanned showed that the disease hadn’t been active in the last six months. Which should be a great thing but I felt confused and pissed off by it. I really wish the scan would have shown something so that there was some sort of reason for why I am feeling the way that I am.

After my last appointment I started on a new medication and I have taken it for a month and haven’t seen any change in how I am feeling so I don’t know if it is working or not. She did say that I could take it twice a day and I haven’t done that yet because I already take so many pills that I hate taking more but I think I am going to try to take it twice a day for a couple of weeks and see what happens.

It is so hard having something like MS because it sucks when you can’t figure out what is wrong in order to try to fix it. I have to wonder if I am going to have an MS relapse soon because this is usually how you feel before you have one or it is at least how I have always felt before one. As of now I am “stable” but I don’t think I truly am. There has to be something going on and it just isn’t showing up on the MRI. My next MRI is in February and I see my doctor again at the beginning of March so we will see what happens in the next few months.

My Sleeping Problems

October 7, 2013

Sleeping Problems

So I haven’t ever written about my problems with sleeping on this blog but I feel I need to write about it because there may be other people out there struggling with the same things. I also hope that someone out there may have some suggestions for things I have tried yet to try to help me sleep. I have always had problems sleeping but in the last few years it has gotten 100 times worse.

I first really started to notice my sleeping problems when I was diagnosed with Multiple Sclerosis when I was 15 or 16. I have always had problems sleeping but I really started to notice them in high school and college. From the age of about 16 I was given prescriptions for Ambien and Sonata which are both sleeping pills. So at this point those two no longer work for me. When I was in my mid twenties they prescribed me Lunesta which for me was a wonder drug because for the first time I was able to sleep and I didn’t seem to get used to them.

I took those on and off for years. The insurance I know have through work refuses to pay for them and there is no way I can afford to pay over $200 a month for them so I haven’t been able to get them. Since I haven’t been able to get them I have had to start trying all the over the counter sleeping medications and I haven’t had much luck with them.

I have tried taking Melatonin and I will still take it sometimes but I have found that I have to take so much of it to get me to sleep that I end up with a huge headache the next morning. The only thing I have found that works is taking a combination if Tylenol PM & Ibuprofen PM along with a time released Melatonin pill to help me stay asleep longer because lately I manage to take enough stuff to fall asleep but I can’t stay asleep to save me life.

I have also stopped watching TV after work and I try not to use my cell phone once I am home so that I can try to wind down from the day but no matter what I try nothing seems to be working for me.

Does anyone know of anything else I can try to use for sleep? I will take any and all suggestions at this point!

MS Tuesday Multiple Sclerosis Hug

August 6, 2013

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!

Weird MS Symptom

June 25, 2013

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?

Things That Drive Me Insane-Nurses

June 11, 2013

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:

Things That Drive Me Insane-Idiot Nurses — 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:

IMG_0286[1] — 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.

Has this ever happened to you???

Multiple Sclerosis Update

March 12, 2013

It is time for another Multiple Sclerosis update. I had an MRI in February to check and see if the MS was still stable and if anything had changed in the past 6 months. For people who have been following my MS journey for me to have been basically in remission for the past 5 years is huge. The disease has always been super active so Tysabri is definitely the medication I need to be on now.

We also discussed a couple of the new treatments that there are for MS and she gave me her thoughts on them and we also decided that since Tysabri is working for me that we won’t even consider changing treatments unless for some reason Tysabri stops working for me. I personally don’t like what I have read and a few of the things she has told me about the medications that are now in pill form so I am not willing to give them a shot right now.

This is a short update but that is because nothing is going on and I hope to keep it that way. I am going to write a post about what an infusion day is like for me so be on the look out for that in the next couple of weeks.