Frustrated With Multiple Sclerosis

Frustrated With Multiple Sclerosis

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.

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My Sleeping Problems

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!

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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!

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Weird MS Symptom

MS

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?

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Things That Drive Me Insane-Nurses

Things That Drive Me Insane

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???

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Multiple Sclerosis Update

MSIt 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.

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Mulitple Sclerosis Update

Mulitple Sclerosis UpdateIt 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!

MS Tuesday-Depression & Anxiety

I am going to talk about depression and anxiety which are two  Multiple Sclerosis symptoms that have be living with for the past couple of years.  Growing up never had an issue with anxiety and what issue I did have with depression I was able to control and I didn’t have to take medication for it.

About two years ago I had to get on medication for depression because I literally could barely function at work and I was always on edge.  After I started the medication it helped but I noticed I could no longer handle things that I used to love to do.

For example I have always loved being alone.  My grandparents went on a cruise for 10 days last month and I was so anxious because I was home alone most of the time.  The day after they left I literally sat in my room because I was so anxious.  I also found myself checking the door locks a hundred times where as when they are home I never check them unless I have to get up and let one of the cats in.

I believe that in my case my depression and anxiety are cause by the MS.  I know that not everyone with MS will have both of these symptoms and that some people who have these symptoms but not have MS.

Before I started on Tysabri when I would have MRI’s to check and see what the disease was doing I always had active lesions but I rarely had any symptoms.  I believe that while I at the time didn’t show any outward symptoms that those active lesions are what caused my anxiety and depression issues that I currently struggle with.

Right now I take Zoloft for the depression and I don’t treat the anxiety because I have learned how to talk myself through it.  I also have found that removing myself from the situation that is causing the anxiety is a great way for me to cope with it as well.

I received the book called “It’s Not All in Your Head: Anxiety, Depression, Mood Swings, and Multiple Sclerosis” by Patricia Farrell.  I can’t remember the site where I was signed up and got the book for free but from the little bit of it that I have read it can’t wait to read more of it.

I would recommend the book to anyone with MS or anyone that has a family member or friend with MS.  Once I am finished with it I will for sure write a review and I think I will give it away to someone with MS.

In the end I want people to know that is you have developed anxiety or depression that you aren’t alone and don’t be afraid to ask for help.  At first it was hard for me to ask the doctor about it and start the medication but the more I learn about MS and what it can cause I understand why I have had to go on medication.

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My MS Meds

I am not sure if anyone would be interested in the medications I currently on for my MS but I am sure there is someone who would be interested to know what is working for me right now and all the things I have tried that hasn’t work for me over the 11 years I have be treating the MS.  For this post I am going to talk about the medications I am currently on and what I am taking them for.

Tysabri-I am currently using this to treat the MS.  I have been on it for over 3 years now and even though it is dangerous I won’t stop taking it because it is the only MS drug that is out there right now that is controlling the MS.

Baclofen- I take this three times a day.  There are some days that I may only take it once but depending on pain & how I am feeling I may take it all 3 times.  I use this for the spasms I have and I also use this because of my back injury.  If I don’t take this at night I wake up stiff in the morning and in tons of pain.

Zoloft(sertraline)-I take this once a day and it is my antidepressant.  Depression runs in my family but I also think that the MS has made mine worse and also made me super anxious.

Loritab- I use this as needed for pain.  I get 20 pills a month and I usually use them all but  most of them are use the weekend and week after my infusion because that is when I tend to have the most pain.

Fiorinal- I use this for my migraines.  I have had migraines since I was in 5th grade.  Most of the time if I can catch it at the beginning I can stop it from getting super bad but on days that I don’t catch it or it doesn’t respond to the usual things I have to take 2 of these.  The thing I love about this medication is I can still function at work while I am taking it.

I also use things such as Benadryl, Tylenol, and Ibuprofen almost daily.  If you have any questions about any of the medications please let me know.  Next time I am going to write about what MS treatments I have used and why I stopped using them.

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What Is Multiple Sclerosis


I am sure  most of you know that I have Multiple Sclerosis (MS).  I was diagnosed when I was 15 or 16.  I know that many people don’t know anything about MS so I am going to write a little bit about it in order to help raise awareness to the disease and to open peoples eyes to what this disease is.

  • Multiple Sclerosis is what they call an autoimmune disease.  This means that the persons immune system for some reason decides it is going to attack some part of the body instead of only attacking viruses and things like that.   In MS the immune system decides it is going to attack the nerves of the CNS (central nervous system).  The CNS includes the brain and spinal cord.  They are not sure what triggers the immune system to think that part of the body is a invader and needs to be attacked.
  • MS symptoms happen when the immune system attacks the myelin around the nerves.  If you think of your nerves like a wire the myelin would be the protective covering around the wire.  If the nerve underneath the myelin gets hurt that is what causes the symptoms and some times causes permanent disabilities.
  • The body tries to repair the damage that is done but it is never the same. Once the nerve is damaged it won’t ever function the same again.
  • There are a lot of different symptoms that go along with this disease.  I am going to list some of the most common ones: Fatigue, problems with walking, numbness, tingling, slurred speech, tremors, stiffness, problems with vision, cognition, speech, and elimination.  Every person with MS has different symptoms. Which makes some people wonder if everyone that has MS actually has the same disease or if it isn’t a few different diseases that just get grouped in with MS.
  • Anyone can get MS.  Women are more likely to get it than men and so are people with a lighter pigmentation to there skin.  So Montel Williams who has MS is a real rarity.
  • They think MS has a genetic link but they aren’t sure what it is.  In my case there is no one in my family history of it.
  • You usually get diagnosed between the ages of 20-50.  I was a rarity and was diagnosed at age 15 or 16.  Although younger patients are now getting diagnosed because doctors are starting to look for it at a younger ages.  I have noticed though that I have had lots of activity show up on scans but I haven’t had many flare ups that people could see.  In fact if I didn’t tell you I had MS and what symptoms I do have you can’t tell I have it all.
  • MS is rarely fatal.  Most of the time people with MS with get a common cold of the flu and that is what will end up taking their lives.
  • There are several treatments out there that each do things differently.  I am on one called Tysabri and it is the most expensive and most dangerous of the drugs.  All of the current MS treatments are expensive and it makes it hard for people who don’t have insurance or even with insurance to afford.
  • It has been shown that treating the disease helps  to stop the progression of the disease but since all the treatments are so expensive there are many people who simply can’t afford to treat the disease.
  • There is always new treatments in the works and exciting things happening in research that hold so much hope for future generations.  They came out last year with the first pill you can take once a day for treatment.  Up until the pill came out all the treatments were either shots or an infusion.
  • There is currently no cure for MS.

I think I  covered most of the major parts of the disease but if you have questions or want any more information please let a comment and I will answer your questions!

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