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Vertigo

Is Vertigo caused by a lesion on the brain? Or is this something that everyone with MS has to deal with for some other reason?Does it matter which way you feel like you are spinning? And to be fair, the world is spinning. Not me. 

Do the doctors ask this question to see if you are making it up? If you can’t tell them in which direction you are spinning then you must be lying. 

Or does it mean something if the world is spinning left, or right , or if you feel like you are rocking back and forth?

I have experienced all 3 of those. But at this very minute the world is spinning left like I’m in a tilt a whirl. 

Well it turns out that YES. Yes indeed Vertigo is caused by lesions. Specifically lesions in the complex pathways that coordinate visual, spatial and other input to the brain needed to produce and maintain equilibrium.

Good times people.

After doing some research on this it seems that it doesn’t matter which direction you are spinning, but that you are in fact spinning in a direction. 

http://www.susqneuro.com/publications/dizzy/

This site has a great explanation. They refer knowing you have Vertigo to being like knowing you are in love. There is no question. You can commit to it. 

Yes.

I am definitely spinning left.

Because otherwise there could be different reasons why you feel dizzy that are not Vertigo. And you want to make sure that you are being treated for the correct ailment.

So there you have it people. Commit to a direction and take your motion sickness pills. 

*not me though. I’m going to sit here on the couch and pretend I just got off an awesome rollercoaster. Wweeeeeee!!!!!!!

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Posted by on January 24, 2017 in Life with MS

 

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Tysabri or Bust

  
I am attempting to live in my own little world right now. I am craving that hut in the woods.

Some how I managed to set the bar too high. Not somehow. I do what I want, and how I want to do it. That is what set the bar too high. I am blessed to be able to do this. I love everything that I do and I want to do it great. Normally I feel like such a slacker. There are so many more things that I want to be doing, so many more things that I want to be learning! Right now however, I just want everyone to expect nothing from me. Right now I am capable of nothing. 

My infusion had to get pushed back a week. Which I know explains everything. Thank goodness I am here now. A friend of mine posts at every infusion how unhappy she is at infusion time. I don’t understand this. I look forward to my infusion like a life raft. I am terrified of the day that they take me off of Tysabri. 

This thought is what filled my mind on the way here today. Sometimes I wonder if it would make a difference. Do I only notice things that are wrong with me because I’ve already been diagnosed? My whole life I have been the “suck it up and deal” kind of person. I am still that kind of mom. “Is it broken? Are you bleeding? No, than stop complaining.” So why is it that now I am so sensitive with myself? I can still walk, talk, breath, eat, see. I can do everything! Is that because of the Tysabri? Probably. Let’s not think about it, right? 

If I am honest I know that the dizziness and the fatigue are not normal. But is it something that would send me to the doctors if I wasn’t diagnosed? No. Not ever. I’m surprised it did 6 years ago. Of course back then the crap with my eyes and the fact that my face went numb would have sent me. When I think about what I am going through now though, there would be no doctors. 

I feel very, very fortunate with my life. That said, I crave some serious alone time. No responsibilities. No, don’t worry about it Janet will take care of it. For a little while I’d like to be in my hut in the woods. 

Don’t worry world I’ll be right as rain tomorrow. Tysabri is coursing through my veins as I type.

 
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Posted by on March 15, 2016 in Life with MS

 

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The Big One

Sight.

This is something that I really think that we take for granted. That is until it is compromised. I think that since eye problems are something that I have had to deal with since I was 7 it wasn’t as bad for me. The pain though…. But let’s start from the beginning.

My very first symptoms. There were a couple but since they happened at the same time I decided to let them share a blog as well.

It all started with Vertigo, then an up-beat nystagmus in both eyes, and optic neuritis. That is the order in which they were diagnosed.

The Vertigo I already described so I won’t do that again, just keep in mind that that was underlying everything else that I am going to describe. Adding that at the time it was so, so much worse. Like I had just gotten off of a spiny ride, but all the time. I walked into a lot of walls. 😦

Up-Beat Nystagmus. The clinical description is that the eye drifts down and then jumps back up to correct itself. Well for me it was happening so fast it was like it was bouncing. Besides it adding to the vertigo symptoms I didn’t really notice it. Except if I tried to look at just one thing all by itself. Like for the eye exam. The doc turned off the lights had me hold that stupid thing up to one eye, turned on the light box and asked me to read the lowest line that I could. Which for me is the giant E. Well I told the doc that if he could stop making it bounce then I’d read it for him. That’s when I got sent to the ER. 🙂 So unless you are used to having good balance most of the time, or stare at objects often, this symptom (when coupled with the knowledge that you have a disease already) isn’t that bad. It’s possible that having this all by itself would be different, but for me it was just the side show to the Optic Neuritis.

Optic Neuritis. This was the bane of my summer 2 years ago. Optic Neuritis is painful. I can’t think of anything real to use as a description. It hurt to look in any direction but straight ahead. Even then there was pain all around my eyes. Like the socket itself was hurting. I hate to get graphic with you but… It was like being poked with needles (around the eye) if you tried to look in any direction. Keeping my eyes closed was the best. Not always possible. Especially since this symptom lasted for around 6 months. The holidays were the worst. When people wanted to talk to me and I had to look at them. That was another thing. My vision was very blurry. I had to stare at something for a long time before I could actually tell what I was looking at. Unfortunately concentrating like this with my eyes brought back the needles. Except this time the pain was actually in the eye. People really worry about you when you are staring at them intently with tears in your eyes. Especially when all they just said was “Hey did you like the turkey?”

On Tyler’s first day of school that year I had to pick him up in their all-purpose room. The whole school lines up there by class to wait for their parents to come get them. I had never met his teacher, this was the first time in this school, I had no idea what I was doing or where Tyler was. So I walked into the giant white room with thousands of blurry things that looked like people and just stared. I’m sure I got lots of strange looks, but who would know. I couldn’t see. Finally I focused (painfully) and found Tyler. But that was a horrifying moment for me. It was definitely the closest I’ve ever felt to going blind.

On top of the pain and in ability to focus I had double vision. I’m not sure if that is actually part of optic Neuritis. I’m not sure if the focus problems are part of it either. They told me that the pain was. I did learn that driving with double vision is not a good idea. I did a lot of that. 😦 I was refusing to admit to myself that I actually had a problem. I wouldn’t let other people help. Hence my blog title. I’m getting better at that though. (not really 😦  I actually think that I’m just getting so good at pretending there is nothing wrong with me that people believe me now)

Unfortunately these symptoms lasted a very long time. I went through 2 rounds of solu-medrol. The only benefit that I got from that was that the day or two afterwards I was lucky enough to experience relief from the symptoms. Otherwise I was starting to wonder if it was going to get better at all or if I would just have to deal with this for the rest of my life and pray that it didn’t take away all of my sight. Imagine feeling like that. 😦 It was not fun. I found out that they make glasses that you can wear while driving to correct the double vision though. Good to know in case it happens again.      

Now I just pray that it never attacks my eyes again.

 
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Posted by on March 12, 2012 in Life with MS

 

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Vertigo

Ah vertigo, how you make my life so interesting!

This is an ongoing symptom for me. It gets much worse when I’m tired, but it is always there. People watching me sometimes must really think that I’ve lost it. It is not uncommon to see me grab onto the nearest item for balance. It’s embarrassing when that nearest item is a person. But that is rare, thank goodness. There are a lot of walls in this world. 🙂 And if there is one close I will just fall into it for support. This also can sometimes be embarrassing. For instance when I am dropping Noah off at school and can’t walk in a straight line and fall into the wall. That only happened once, but still embarrassing.

For anyone that has never experienced vertigo, I have a perfect comparison. If you have ever spent a long time on a boat, I’m talking days, like a cruise, and then you go onto dry land. That’s how it feels. Not exactly like it does when you are on the boat. Because when you are there you are expecting the movement. Your body makes adjustments. Your brain makes adjustments. But once you are on land you are still making those same adjustments, only the ground is not moving. And this comes as a shock to you over and over again. That is my life on a day to day basis. I keep waiting for my body to adjust to dry land or my time to get back on the boat so that things are normal again.

I am very curious to see (or feel) what this will be like while actually on a boat. 🙂

 
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Posted by on March 8, 2012 in Life with MS

 

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