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???

Digiprove sealCopyright secured by Digiprove © 2013 Margaret Margaret

Headache. . .

headache

Yesterday I wanted to write about something that gave me a headache for the Writers Workshop but I already had a book review that had to be posted that day so I figured I would post this today.  I wanted to write about this because I have had a headache for a month now in fact we are coming up on 2 months with the same headache.  I can’t blame this headache on just one thing so I am going to make a list of things that I think are causing it.

  1. The weather has been super crazy lately and it is always changing.
  2. The fact that since it has been warmer some days my cats have started to shed and I am allergic to them. (This one is my own fault and I know it but they are my kids so I won’t get rid of them)
  3. We are putting in new flooring in the living room, dining room & hallway.  My girls usually sleep on the couch and chair in the living room but since it has been torn up they have been sleeping on my bed almost all night so that is putting tons more cat hair and what not in my room.
  4. My Multiple Sclerosis medication can cause sinus infections and I am prone to have them as well.  I am pretty sure I have a sinus infection but I know that going to a doctor for it isn’t going to do anything so I just take decongestants and wait it out.
  5. Stress from work has also be huge problem lately as well.
  6. I also have been eating too much gluten and I am paying for it big time.  I will do really well some days and then other days and weeks all I want to eat is things that have gluten in them.  I am being kind of stubborn and still eating things I know that will make my head hurt but I am tired of not having what I enjoy.
  7. The final thing that has been giving me a headache  is all of the reading that I have had to be doing because of all the book reviews that I have coming up in the next two months or so.

Those are the things that are causing this almost 2 month-long headache.  I know there are probably tons of other things that aren’t helping as well.

What gives you a headache?

Digiprove sealCopyright secured by Digiprove © 2013 Margaret Margaret

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.

Digiprove sealCopyright secured by Digiprove © 2013 Margaret Margaret

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!

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.

Digiprove sealCopyright secured by Digiprove © 2012 Margaret Margaret

Multiple Sclerosis Update

It has been a long time since I have written a post about Multiple Sclerosis and I really want to keep everyone in loop on what is going on with my health and all that fun stuff. Most of you know that I have an infusion once a month for my MS treatment. I take a medication that is called Tysabri. It is super expensive and can be dangerous but that is going to be another post. I was supposed to receive my infusion on the 23rd of September. That didn’t end up happening because the company I work for changed health insurance companies and I had to wait for a preauthorization to come through before I could get my treatment. So I show up on the 23rd and they send me home because of the whole insurance issue. For those that know a little bit about my job and what has been happening the the last 4 months or so you know that I can only take one day off a month because they have no one to cover the phones since they let go Misti who used to be my boss. So I knew I was going to have to wait a few weeks before I could take time off to go in and get the treatment once they got the approval that they needed.

My next infusion is on the 21st of October, which means that I have missed a whole month. Let me just tell everyone I have no idea how I used to live like this because I feel like crap. I always knew Tysabri was helping but I had no idea that it was helping so much. For the last 6 months or so I have had headaches and I also haven’t been in pain. Well since missing one month I hurt I have headaches and am exhausted. I literally slept almost all of Saturday because I was so exhausted from a normal week of work. I had to call my doctor and have her call in more pain pills because I was out and hadn’t need them so I didn’t bother getting a refill when I saw her last time. I feel so bad for people with MS that fill like this all the time. I am so glad that I have found an MS treatment that works for me and allows me to be a somewhat normal 26 year old. Also my hands are super numb right now and I am not sure if that is because I missed my treatment or just how the disease is acting right now.

I can’t remember if I wrote about my last MRI and doctor’s appointment so I am going to do a quick recap of all that information. I had my latest MRI in August and also saw the doctor after the results came in. According to the scan I am still stable and have been for about 2 years or so. They haven’t scanned my neck in a few years so when I go for my next MRI in February they are going to scan my brain and neck areas which means that it will be a super long and super expensive scan. I am interested to see if there have been any changes in the neck area. If there hasn’t been any changes that means I have been stable but if there are charges that means that I really haven’t been stable all this time. I hate the not knowing that goes along with having MS.

That is all there is for now. If anyone has any questions please leave them in the comments and I will answer them for you.
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New Design & My Latest Infusion

As you should have noticed I got a new design from Jacqui!  I love this one and may keep it longer than the last one lol.  I am finding I get bored easily and love to have new blog designs.  I need to leave it along for awhile because I can’t afford to keep changing it every few months.  So this one will stay for awhile!

I had my infusion on Friday and it went pretty well.  I didn’t take the Benadryl that I usually take because I wanted to see if I could get along with out it.  I am happy to say that I didn’t need it this time.  I did get a headache but that is pretty normal.  The one thing I did notice about this infusion is I was super tired after it.  I hate how I am tired for a few days after and then come Monday or Tuesday I am good to go.  Oh well if that is one of the only things I have to complain about I will deal with it because I am starting to feel better after them again.  It has taken a few months to get back to where I feel better after them.  Now I need to start walking after work so I can lose all the weight I have put on these past few months because I haven’t been able to do much because I was so tired. 

I hope everyone has a great Monday!  I may be missing for a few days because work is super busy for me right now.  I had tons of work left on Thursday and since I am off this coming Friday as well I need to get totally caught up!  Wish me luck!

My Latest Infusion

I had my latest infusion on Friday the 7th.  I went to a different place then were I went for this post.  This place was so much better.  It was even better than it was when I went to the hospital for them.  I slept this time which is the first time since I have been doing them that I have actually slept.  I slept for about an hour and it was much needed.  I would have been worried if I hadn’t slept because I had a lot of drugs in my system because I had a migraine when I went it and I had to take my Benadryl(sp) because of the reaction that I sometimes have to the Tysabri. It was really quiet and relaxing there.  This time the doctor didn’t make me talk to him about stupid stuff because he knew that I was there for the Tysabri and that I probably knew more about the drug and disease then he did. I am glad that I finally found a place that I like and that didn’t act put out that they had to help me.
This is a short post but there wasn’t much to say on the subject.  I hope everyone is having a great Wednesday.
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Utah Cancer Specialists In SLC. . . Totally Suck!!!!!

I am completely amazed at the lack of customer service that doctors offices now have.  I was totally amazed how I was treated at the place I had to go for my infusion today.  I have never been treated so badly before in my life.  This post may be long but I have to go into detail so you will all get the full effect.

I was already mad that I had to go and see one of their doctors but I got over it but because of how good the MRI was I knew I had to jump through the hoops they wanted me to do in order to get the infusions.  So after I sat in the waiting room for like 20 mins or so with everyone staring at me they took me back to a room.  On the way back they wanted to weigh me and get my height.  I am not going to give out the weight but lets just say that since I was lasted measured I have shrunk from 5’4″ to 5’3″!!!  What in the hell is up with that!!!!!!!  I thought you didn’t shrink until you where like 70 or so.  Guess by the time I am 70 I will be 1′ lol.  Anyways lets get back on track.  So they take me back to see one of their dumb doctors and lets just say she is a major bitch!  Her and I argued over what my car entailed.  Like I haven’t been doing this for months as it is. 

After I got done with her I went and waited for them to call me back into the infusion room which took another 20 mins or so.  Let me remind everyone that I still had to go back to work after this was all done at it was almost 11:30 at this point.  I was supposed to be back to work at around one and the infusion takes about 2 and a half hours.  Anyway when they took me back they put in the IV and then drew the labs they needed to do.  Usually at this point the hook up and medication right away and I don’t have to sit there are wait for the labs to come back.  Well even after telling the doctor I don’t have to wait they still made me sit there even long while they ran my labs! 

The nurse I had was a idiot that didn’t brush her teeth.  I love when nurses don’t listen to me when I say I don’t want something done.  The infusion in and of itself went really well which was good but the reaction I usually have during the infusion just happened later that night.  After I left there I called Tysabri and told them I won’t go back there and they need to find me a new place to go in order to get my infusion every month.

I guess what made me the maddest was the fact that they didn’t listen to me about my care and what I wanted done.  I hate when people in the medical field think I am a total idiot.  Hell if she didn’t believe me then she should have called my doctor and found out I was right!  The nurse was also not a nice person to me.  They all acted put out that I was there.  Like I really wanted to be there with a bunch of cancer patients.
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