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Oh is it ever a new year!

So first, unofficial photo shoot under my belt. Weird. I am now a published writer. Ha! (Having nothing to do with the photo shoot, that was all about my husband. This is the life of the wife of a politician.) Ok, so all I did was write an article for our local town paper. But it’s out! It’s in people’s homes! Why, when I know that this blog has the ability to reach the entire world, am I so excited about an article that only reaches the members of my town? I don’t know. It’s something about seeing it in print. Something about seeing a title in a paper followed by my name. I love it!

There have been many other blogs, articles, that have talked about how people with MS’s life is split into two. There is the life that we started with, and then there is life after diagnosis. I have been thinking about this a lot recently. Yes, I am a little too familiar with some doctors now. But in truth, because of my right eye, I have always had issues. So all I’ve really done is add a new specialty. There are now new tests and I no longer have any issues with needles. I miss having issues with needles. I miss needles not being a common place thing in my life.

However, if you knew me before you may not even notice a change. My husband and kids notice a change, but random people that I see, let’s call them friends, probably wouldn’t notice. I myself have finally come to a point where I don’t see it as a before and after scenario. For the first year, ok 2 years, after diagnosis I was convinced that life would never be the same for me again. It didn’t help that I was on Copaxone, that wasn’t working and I had upwards of 9 new lesions at every MRI. But Tysabri has brought me back to life. No new lesions in 3 years. I’ll take it! Sure I still have issues from the previous ones. Those are things that are as of now unfixable. But I’m positive, I have put myself back out there in the world, my family is doing great, it’s a good new year! Now all I need to do is win the lottery so that I can go back to school. 🙂

 
 

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Is Snow good luck? I hope so!

It snowed this morning! Just enough to make everything white and beautiful. I think that it should do that every morning from now until March.

Today I’m back at the hospital. Just the infusion. No new catastrophes. I get my blood test back today. Hopefully that is good news. I don’t know what to do if they say that I have the JC Virus. Do I continue to risk my life on this drug? If I was still episode free I would say yes. Emphatically YES! I have felt so much better on Tysabri than I did on Copaxone. But i did have an exacerbation (I keep calling it different things because I don’t know what to call it). So if the test comes back positive is it still worth it? I don’t know. Hopefully it is a mute point. I’m just sitting here waiting for the news. Also to be hooked up. They are slow today. But my favorite nurse is back!!!! No needles in the hand for me today. 🙂
Of course on the way here I was thinking how it would be nice to avoid needles for a while. Maybe a bit longer than a couple of weeks. Wouldn’t that be nice?

My left leg from knee down still feels weak. I have been walking again though. I tried to do more strenuous exercise than walking but I only made it 10 minutes before the room started spinning. : ( I’ll try that again next week. Shaun T is going to have to wait.
My left thigh gets a hell of a work out with just walking though. About 2 miles in I start having to throw my leg forward to keep it going. Thank goodness it has still been holding me up though. No more falling for me! I hope, I hope, I hope.

Ah! Still no results. But at least I’m hooked up now. I’m off to loose myself in my book.

 
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Posted by on November 12, 2013 in Life with MS

 

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MRI

Today is my third MRI. I feel like I should be placing bets on whether or not I’m about to make it 3 for 3. My first 2 MRIs came back with new white spots. I will actually be surprised if this one doesn’t also come back showing new spots. At least the results for this usually come back pretty quick. That is if they are willing to share over the phone. They have been so far, but new doc, new rules right? We shall see.

Things have definitely been worse for me since it was confirmed that the copaxone isn’t working. I am aware that this is most likely a psychological thing and not so much a physical thing. I have always been a big believer in the “knowledge is power” thought process. However right now I would rather go with “ignorance is bliss”. And right now I can’t stop thinking about the Matrix. 🙂 But honestly with everyone giving me the, “Yeah you’re ok RIGHT NOW”. Like there is a ticking time bomb in my brain just waiting to explode.  I think I’d take the other pill.

I’m not expecting my next post will have good news. I am pretty confident that I have decided what route I am going to take medication wise, but not completely. This decision sucks! Next week I am going to a seminar that is being given by the company that makes Gilenya, and my Doc is one of the speakers. That should be interesting. Maybe I’ll learn something new and less scary. Or more likely new and more scary that will help in my decision making.

Most importantly, this time, I am remembering to bring socks to the MRI. 🙂

 
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Posted by on October 11, 2011 in Life with MS

 

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Worst Case Scenario

I knew everything that he was going to say before he said it. Well minus the medication he thinks that I should be on now. Yet somehow I am shocked. I feel like I was just diagnosed for the first time, all over again. Except this time I know exactly what that means. My mantra for the day is “pull it together, you are going to be ok”. My little bubble of them deciding that I was misdiagnosed and I’m really just fine was definitely popped last night. But let me write about the good things first.

The MS Care Center was very nice. It made me feel like I was actually seeing someone who knew what they were talking about. Actually it was more like a whole team of people who knew what they were talking about. It was wonderful. First there was a physical therapist, I think, it was late, I was tired and slightly delusional. He had me do a test that I have never done before. I had to put little pegs into a little board and then take them back out again. He timed me for this and apparently I did ok. The hardest part was that the pegs were in a bowl which made them hard to pick up and atleast a pot of coffee into the day my hands were shaking, but I did it in 22 seconds. He said anything around 20 was normal. Then there was the walking down the hall in a straight line. I’ve done that before. I managed to not bump into any walls. Then into the exam room where a nurse made sure that I didn’t have any numb areas and checked my blood pressure. All still good. Then the doc came in. He did the usual tests. Follow my finger with your eyes, and he hit my elbows and knees with that stupid hammer, and the strength tests. Still good.  Apparently my biggest problem was that I opened my mouth. Oh and my MRI wasn’t good either.

He said that everything that I have been experiencing, plus my last MRI prove to him that the copaxone isn’t working for me. So now I need to go for another MRI, good bye $300. He is trying, and I think he’s winning, to talk me into switching to Tysabri. My biggest problem with Tysabri is that the side effect is death. No joke. Death! Well to be more specific a brain infection called PML. So I am taking a blood test on Friday to see if I already have PML, since it already exists silently in some people. However, even if I don’t have it there is the possibility that I could contract it.  UHG! The reason I am considering it is that it’s success rate for “quieting” MS is really good. Of course it’s only been out for 2 years but all MS treatments pretty much just came out, except copaxone. Like a lost love, that’s how I feel about it now. Copaxone has been around for roughly 16 years now and if it works is wonderful. Damn it! Why did I have to be one of the people it didn’t work for?

I really, really am trying to see the silver lining here. Maybe it’s that I won’t have to give myself shots anymore. Tysabri is an infusion that you get once a month and is given by a professional. No at home, the husband has to do it, infusions like the steroids were. So I guess that’s good.

Now I just have to have my MRI, pray that there aren’t new lesions, and take my blood test. End result, new drug by Christmas.

 
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Posted by on September 28, 2011 in Life with MS

 

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The Wait is Over

After waiting 6 months, the day is finally here. I am going to see my new Doc today. It is frustrating to me that I have to take my son out of school early in order to get there, but this is what we do to see a specialist. Mostly I am very excited about being seen by someone who really knows what they are talking about. Someone who specializes in MS. I do have a few concerns though. I think that he is going to send me for another MRI. My last MRI showed new signs of deterioration of my Myelin and I am sure that they are going to want to check and see if anything has happened in the last 6 months. Now I’m not scared of taking the MRI, just paying for it. My new insurance is making everything cost a fortune and I am feeling very poor right now. Also, I am afraid that he is going to decide that the copaxone isn’t working well enough for me and that I need to switch meds. I love copaxone. There aren’t any side effects. I’ve gotten used to the shots every day. They are only subcutaneous (spelt that right on the first try!) so the actual shot doesn’t really hurt that much. The medicine seeping in to my body is a completely different story. But I am afraid that I’m going to be switched to one of the every other day and injected into your muscle shots. Not to mention that that doesn’t sound pleasant, those all have side effects. Fun side effects like flu like symptoms. I don’t want to feel sick all the time. 😦

So I am keeping my fingers crossed. I may have new holes in my brain, but they aren’t effecting me physically. Does it sound strange to say that then that isn’t bothering me? I refuse to leave today without the name and number of a good psychologist. Hopefully it is someone who won’t mind if I prattle on about things other than my MS. Especially since MS seems to be the least of my reasons for psychosis these days.  Hopefully all will go well.

 
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Posted by on September 27, 2011 in Life with MS

 

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