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In need of more understanding!

I am starting to be confused about what Tysabri is actually doing to me. I thought that I knew. I did a crap load of research before taking it. But now I wonder. For the most part, what it is doing is making it so that my immune system can’t pass my blood/brain barrier. Yeah! And Oh Crap! All at the same time, I know.

The reason that I am starting to wonder is because I can feel it running out. I get an infusion once a month and at the end of the month it starts feeling like I’m having another attack. Or better yet the same one all over again. This month seems to be the worst so far. It hit me like a truck yesterday afternoon. And now I have something new and frustrating to add to the list.

Before I mention what I am going through right now, I’d like to share a little something.

Recently I have been walking to pick Noah (my 4 year old) up from school. His school is a little over a mile away from my house. So not a big deal. We end up walking about 2.5 miles there and back.

Today as I mentioned above, isn’t going so well for me from an MS stand point.

When I got to the school, and yes it took longer than usual, one of the other moms asked me how far of a walk it was. I told her and she asked me how long it takes me. So I looked at my watch and told her that today it took me 20 minutes. Now I said this with pride. I was excited that I made it there at all, and was still standing and not leaning on any walls.

Side note about this woman, she knows that I have MS. She also walks around the park across from the school before picking up her kid. (So she must know everything 🙂 )

Well she came back with, yeah when I started walking I was walking an 18 minute mile and now I’m walking a 14 minute mile.

Now I never come back with witty things to say to people like that until like a half hour later when I’ve had time to think of it. So I was like, oh well I guess I’ll walk faster with more practice. Even though I’ve been doing this for at least a month now, and for some reason I am still making excuses for myself. Thank goodness my friend jumped in with, yeah well she has to stop for traffic and things and you are just walking around a park. 🙂 Me being me and avoiding confrontation, I started talking about the weather. 🙂 I’m sure that she didn’t mean to sound as obnoxious as she did. Maybe she was trying to be helpful. Who knows? She had made an equally as self-righteous comment a week ago to my friend and I had her back with a witty comment. So I guess it’s just when they are directed at me that I don’t know what to say. Except to Jehovah’s Witnesses whom I argue with regularly.

UHG!

SO today…. My hands are driving me nuts right now with their lack of cooperation. The flippers are back on both feet. My left knee has no idea which way it is supposed to bend. And I have a new issue. I think it’s a hip thing. When I’m walking I feel like my legs are going to keep going but from the hips up are just going to stay put. I feel like one of those Halloween costumes that separate at the middle. I wonder if I have finally started to look like I’m drunk when I’m walking. Maybe I should be!

The long winded point of this blog is that I don’t understand why this is happening. I realize that the Tysabri is wearing out. Which means that my brain is no longer protected for a couple of days, or is protected again, again it depends on how you look at it. The question that is at the top of my head is, Is my MS so bad right now that even with that small window to attack me is my immune system having a field day up there? Or back there since according to the doc in order for it to be affecting my legs like this it is a spine thing. Scary, Scary thoughts. It’s a good thing that my next doc’s appointment is coming up so that I can ask him. If any of you have some insight for me, I’d love it. I swear I’m only freaking out a little.

 
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Posted by on April 18, 2012 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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