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MRI results are in

I have what people are telling me is good news. It doesn’t feel like good news. But I’ll let you decide for yourselves.

I had my follow up with the Neuro on Monday. My left hand is still a little weak. The doc was very happy about the strength returning to my left foot though. My MRI showed no new lesions on my brain but still showed an old lesion on my cervical spine. He saw this as great news. That means that the Tysabri is working. He was very disheartened when he noticed that I was having problems. Join the club right? So Tysabri is still the super star. He told me that the old lesion that is at this moment still causing problems is in the T4 region. I nodded and pretended that I knew what that meant. When I got home I jumped on the computer to find out. T4 is the 4th vertebra down. The nerves in that area control all muscles from the abdomen and up. Which means it could not have been what was affecting my leg/foot. However it is what is affecting my left hand. That area also controls your  Bronchial Tubes, Common Duct, Gallbladder, Heart, and Lungs. So I guess that I should take solace in the fact that it didn’t affect any of those things. Maybe this is why I start feeling like I am having a panic attack when I am not panicking. But leave it to me to have a lesion in one of the few places that could actually kill me.

I know I know. Don’t stress. I can hear my husband yelling at me in my head.

Now, while the Neuro didn’t out and out say it, I believe that this lesion started acting up again because of stress.

I also now know that unless they did an MRI of my lower spine (the lumbar section) they wouldn’t know about my leg/foot. I bet that if they did that MRI they would find a nice big lesion in the L5 region. I guess that since the lesion was obvious without looking at my spine, why bother. It’s not like they can do anything about it anyway.

I still have the numbness on my arm, hand, leg, and foot. And the weakness in my hand and foot. It’s funny that the longer you are having the problem the easier it is to explain. At the Nuero’s when they had me explain how I was feeling I explained it so much better than last time that they wanted to know if I was having new numbness. I said no, I’ve mentioned it before. I’m just not panicky and cloudy right now. I like not being panicky and cloudy. It makes the world a nicer and easier place to be in. It’s frustrating that all it takes is the kids to upset me, ok anyone really, and I’m back in the cloud.

So yeah oh fun! All of this sounds like fantastic news doesn’t it?

I haven’t gotten the blood test back yet. They said that when it’s a study that is testing it, then it takes longer to come back. It could be another month. I’m not happy about that. Honestly though, it won’t make a difference. Now that I know that I don’t have any new lesions I’m not switching drugs. So if it comes back positive. I’ll just have them monitor my levels of antibodies. I’ll just have to make sure I am on top of my research about the JC Virus and what I should be looking out for. I am hopeful however that my results will come back negative and I won’t have to worry about any of this yet.

 
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Posted by on November 20, 2013 in Life with MS

 

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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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Day ? I don’t know I have already lost count!

I’m still going strong baby! Really excited about that!

Let’s see where did I leave you? Ah who cares right? No one wants to hear a day by day of my summer.

I did go to the Crayola Factory with my kids…. And my sister’s kids….. and my aunt and 87 year old grandmother….. and my 12 year old cousin. But that’s not what made it a crazy day. It was a rainy day so every kid for miles around was there. It was a ridiculous mad house. I am so very, very thankful that my eyes are all better. My advice to the world at large is that if you are having eye problems, like say an upbeat nystagmus (or probably any direction) or Optic Neuritis, avoid the Crayola Factory like the plague! All 4 floors are a riot of bright colors (shocker). And the amount of people, there is no break. Not even on the benches against the wall that you have to fight to sit on. I will admit to having a couple of verbal confrontations with other moms, and grandmoms. Since a 90+ year old hag cut my son in line after we were waiting a half hour. You know I can deal with the routy kids. The obnoxious parents are another thing all together.

“You know what Lady, we have all been waiting in line a long time. When did God come down and say that it was time for you to jump in front of us all and go first?”

Yeah I don’t handle other parents well at all.

For those of you without any eye problems and are capable of being civil, I whole heartedly recommend the Crayola Factory. I actually think it’s called The Crayola Experience. It was very cool. There was a chance for the kids to be creative on every floor. We made our own crayons and markers and a whole bunch of little art pieces. We had a blast. Also the town that it is in Easton, PA is really neat. Book stores (of course that’s the first thing that I noticed) right next to coffee shops. Not Starbucks mind you, but honest to god coffee shops. Love it! And then for those of you that that is not enough for, there are museums and such. I wish that we had more time to spend there than just an afternoon. Maybe another time.

Last night’s fireworks were canceled due to rain. Made me very sad. It was the fireworks show at the vineyard. They were so cool last year. Tonight is the 4th of July Party at a family friends. We are very excited. Everyone except Tyler who would be happy sitting on his computer all day. : ( We will force the fun on him. He really has no choice.

On the MS front I am doing fantastic. I got my blood results back. No JC Virus antibodies. No Tysabri antibodies. So all is full steam ahead for my meds. I have been seriously thinking about adding another doc to my repertoire. I don’t love my Neuro. I love that he knows what he is talking about and that he has the Tysabri infusion center. But his bed side manners ugh! He has a pill for everything. Tired? I have a pill for that. Anxiety? I have a pill for that. Having troubles remembering things? I have a pill for that. AAAHHHHH!!!!! So I found another doc who will hopefully be able to actually listen to me. She specializes in Lyme’s Disease. A lot of the symptoms with Lyme’s mimic the symptoms of MS. So my newest issue of having Anxiety attacks, when I have no reason to have anxiety, she knows what to do with. Also I am hoping that she will take me off of the happy pills. I like being happy. But I would like a better way of managing the debris floating around in my brain that makes me sad. I’m excited to go see her. I can’t wait until the anxiety attacks go away. It feels like you are having a heart attack. You can’t breathe. You feel like something is sitting on your chest. It is absolutely debilitating.

Alright, I feel I have probably talked enough for one day. I hope that everyone in the states enjoys their Independence Day/weekend.

 
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Posted by on July 4, 2013 in Life with MS

 

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Doc’s

I had my 6 month Nero Appointment.
I told the Nero, the nurse, and the physical therapist how things are going and my new issues. The consensus of opinion is that….

Wait for it….

I have MS.

Shocker, I know.

Apparently everything going on with me is normal for a person with MS. It’s just the new fun filled world that I get to live in now.

So no new MRI. I was upset about that. I like to have proof that there are holes. It makes me feel like I’m not loosing my mind.

Now they are testing for the JC virus every 6 months so I’m being tested for that again.
I have decided that even if it comes back positive I am going to stay on Tysabri for another year. Studies show that I will most likely be ok the first year. Of course I haven’t talked to Rich about this. And he may not be so cavalier with my life.

The Nero has sent me for a cognitive function test. He said that it will help pin point exactly where and what the problem is. After that they can give me some therapy to help with it.
But no magic pill. Which is what I was hoping for.

My mom thinks that I am being too hard on myself. That I shouldn’t be expecting so much from myself. All I’m expecting is normal though. I didn’t think that that was too much. The doc said that this is my new normal.

Well I’m here to tell you that it sucks!!!

 
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Posted by on May 14, 2013 in Life with MS

 

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Infusion Day

I just got a compliment that I have never received before. While walking through the infusion center a woman said “You walk so well.” I laughed. I thought that it was funny. It seems like a strange compliment. However, then you have to take into effect where I am. I hope that the woman isn’t mad that I laughed.

My JC Virus antibody test came back. It was negative. So no JC Virus yet for me. Yeah! I like knowing that my brain isn’t going to slowly turn into pudding. One more year of Tysabri for me. Hopefully my next MRI will go just as swimmingly. That’s not for a couple more months though.

Rich came with me this time. My mom came with me my first time and compared the experience to when she had to go with her mother for her chemo therapy. Which I didn’t realize is also an infusion. There was also a time when I brought my mother-in-law. Not on purpose, but she refused to let me drive myself. Well she was very upset. Of course she was very good at not letting me know that she was. When we got back to her house I over heard her talking to my Father-in-law about it. The gist was “I can’t believe what she has to go through.” That surprised me. I never really gave it a second thought. What the medicine is doing and how scary the side effects can be, sure, I gave that a lot of thought. But not the procedure itself. My only thought was, thank god I don’t have to give myself shots anymore. I was relieved. Now I get to let someone else stick me. Then I can just sit here and read my book. Or blog as I am doing right now. I get to give it time if that makes sense. When I was doing the shots it was; do the shot, pretend it doesn’t hurt like a bitch, and continue to get the kids ready for school, or whatever we happened to be doing that day. There was no sympathy or understanding. It was “What’s taking you so long up there?”. But now, now it’s a completely different story. Now the process of getting the meds is so much easier. Except apparently it’s scarier for my “mothers”. My Mom buys me coffee every time before my infusion and my Mother-in-law makes sure that I get all the rest that I need. Offers to drive me and watch the kids. I am feeling spoiled. Rich however I think is not going to have a similar reaction to this. This will just be another day for him. Seeing how he was the one who had to help me with my shots some times and he is the one that had to do my steroid infusion. He will see this as the cushy chair infusion that it is. But at least he took time out of his ridiculously busy schedule to come with me. And before elections too. I really am being spoiled. 🙂

Now it’s back to my book. I am reading Beauty’s Punishment by Anne Rice. It’s very good. This is the second book in her Sleeping Beauty Series. There was a prologue by Anne that helps put in perspective the things that made me mad about the first one. I have never been a fan of the whole slave aspect. The idea of having to do what someone tells you and being punished If you don’t. Especially the degrading things that Beauty is told to do. I am learning with this one to just give in and enjoy instead of needing to be in charge of everything. Listen to me, like I’m actually in the book. Well Anne is yet again opening my mind. Love that woman.

 
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Posted by on October 9, 2012 in Life with MS

 

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One Year In

Blogging single handed today. Unfortunately my other hand has been rendered useless due to my IV.
I am very excited/nervous/scared as hell right now. The infusion center took my blood today. Hence the different location for the IV. Normally it is in my left hand or wrist which still gives me most of my mobility. Now I am concerned that I won’t be able to read my book. More on that in a sec.
So they took my blood because apparently it has been a year and now I’m being tested for the JC Virus again. Yeah! And at the same time, Oh Crap. I don’t even want to think about the consequences of it coming back positive. I probably should so that I am prepared and know what I am going to do. UH!!! I’ll think about it later. It’s a crazy week and I have way too much to think about, plan, and do to get all upset about this. UH!!! I had totally forgotten about the stupid JC Virus. I haven’t been worried about instant death (slight exaggeration) in a while. UH! Time for another Yoga class.
Positive thoughts. I just need a possible contingency plan.
Well, back to the book that I’m not sure I can read one handed. My Mother-in-Law has given me a self help book about love after marriage. Maybe I’m complaining about Rich too much. 🙂 Love you sweetie. I started reading it just because I knew that I would be quizzed about specifics when I handed it back. Well so far it’s not that bad. Course, I’m only a chapter in. I have never been a fan of self help books, but I am keeping an open mind with this one. But while I am reading it I am very thankful that Richard and I are on solid ground in our relationship.
Side note; There is a woman here that is complaining about everything. It is driving me nuts!
Hopefully after this infusion my left leg and my eyes get back with the program. The last week or so hasn’t been a lot of fun. Very excited that the kids are both in full day of school though. More time for me! 🙂

 
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Posted by on September 11, 2012 in Life with MS

 

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The Decision

There is an enemy among us. We first noticed it a year ago. They are growing in numbers and destroying our defenses. We tried to get them to change their ways and come back into the fold. They refused. I think, no I demand, as the queen of this domain that we need to take stronger action against them. I have decided that it is time to pull up the drawbridge. I’m not sure how we will weed out the ones that are already here, but they will be scared. There is no help coming from the outside now. They are all alone…… The citizens of this fair land can now rest easy knowing that the walls are now impenetrable.

 

I have decided to go on Tysabri. Yeah! JCV I dare you to show your ugly face! I’m ready!

I can’t wait to feel “normal” again. I just started the paperwork and hopefully it will all be processed rapidly and I can start as soon as possible. I did a healthy amount of research on both Gilenya and Tysabri. And while they both seem to be decent drugs when it comes to less lesions on your MRIs and less symptoms, Tysabri does seem to come out on top. However that is not why I made my decision. Oddly enough, being the sceptic about side effects that I am, you can’t even blame that for my decision. It was the actual effects of the drugs that scared me. As far as I was concerned, my decisions were instant death or slow horrible sick all the time because I have no immune system death. What made me decide to choose Tysabri is the fact that while on this drug I will be constantly monitored. The infusion center that I am using, actually it helps that I joined a study, does blood tests every time that you have an infusion. The study that I joined is about the blood tests. They are monitoring people’s reactions to Tysabri. Right now the research is very promising for me. It says that 0% of people who have come back negative for the JC virus have had any problems with it within the first year. It also says that .03% had a problem with the JC virus who were tested positive for it in the beginning. Again that is all within the first year on Tysabri. My blood test just came back negative for the JC virus. Yeah! I am very confident about taking this drug, at least for the first year. Who knows, maybe in year something new and less life threatening will come out. The drugs for MS management have been coming down the pipeline pretty quick within the last couple of years. I am feeling very confident about my future right now. Which is not an easy thing to talk yourself into, especially since every MRI I have shows more lesions. 😦 Hopefully that is all about to change.

Right now I am looking forward to a Christmas where I am not depressed and I have energy to run around with the kids like I used to. Also if the dizziness went away and I could enjoy a spiked eggnog without getting sick, I would really appreciate that too.

 
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Posted by on October 30, 2011 in Life with MS

 

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