Friday, October 21, 2011

No I don't want a hug

Seeing as I haven't blogged here for a while....I thought I should.

Today I was introduced to MSHug, WOW that was painful. MSHug is a tightness in your chest, it can happen anywhere from below your rib cage down to your waist and has been know to occur as far up as your neck. It feels like something has grabbed a hold of your chest/body part (in this area) and is squeezing. Thank goodness this only lasted a few seconds while we were at lunch.

The fatigue is still prevalent. Man I could really use a nap in the middle of the day, but that is not likely to happen. :) Besides headaches, dizziness and balance issues everything is GREAT! LOL

I can say I am happy with the cooler weather coming on, because this helps eliminate some of the fatigue, even though it is still there. I just can not deal with extreme cold and extreme heat. The Myoclonus is still here...yah!! I am noticing it more and boy does it hurt to try and control it when I am in public. I already get the odd looks if I happen to stumble...I promise I have not been drinking!!! Could you image adding in twitching with that.

I have my next appointment with my Neurologist in January, so we will see if there are any changes. It seems as each day, month go by...I feel worse, but I am trying to keep positive and fight this stupid disease.

Saturday, February 26, 2011

This is your brain on MS

Let me start this by saying this is not my brain image. The processes of getting my records is well, tedious and I wanted to update my blog prior to having to wait. So, I have "borrowed" an image from the internet and hope that I do not get sued. :)

So, the doctor's appointment was pretty boring for the most part, but we did find 2 more lesions. **note: let me preface this by saying I am not a doctor nor do I play one on tv** I choose to educate myself on this stupid disease so that I am aware of what is happening to me. The first lesion (upper left region) is located close (really) close to the frontal lobe. For those who are interested, your frontal lobe controls "planning, emotional control center and home of your personality, motor functions, problem solving, memory..etc you can read more here. So, my doctor and I agreed that it was a good thing it wasn't there. BUT it is VERY close. :( Now this is what is causing my myoclonus, which is basically involuntary twitching. I noticed a few months ago that my left arm and neck would jerk randomly. (think when your eye twitches).

Next, in the lower right corner of the picture is another small lesion in the Occipital Lobe which processes visual data. So naturally my doctor questioned me about vision problems. Which I have had none (that I recall). I do get the squiggly lines in my vision, but those have been there for years and my eye doctor told me it was from having dry eyes and a stigma. Now occasionally I see (what seems like) movement in my peripheral vision (so maybe I see dead people) who knows. :) So, we are keeping an eye (sorry for the pun) on that lesion.

So whats all this mean. Well, in my doctor's mine he wanted to put me on a steroid treatment right away and I basically told him "NO"! He agrees that these symptoms could go away by themselves and that is what we are going to do. Now he did prescribe me clonazepam; this medicine is an anti-seizure med to help stop the muscle jerks. (so far so good). So now is a waiting game to make sure it works and the lesion disappear. I have another appointment in about 6 months follow another MRI to see that there are no more lesions and that these lesions have gone away. I will keep you updated.

Sunday, February 6, 2011

1st MRI of 2011

I had my first MRI of 2011. Will not know any results until later. I really hate MRI's. They have to drug me up on Zanex (Xanex) to stick me in this tight tube for 2 hours listening to pinging and banging noises. Just so they can look at my brain. Then I have to wait for any information from my doctor, so I just have to sit and wait. Are there more lesions, are there less? Where are they, are they causing my fatigue, pain, numbness or memory loss??

No matter what, I just continue to live my life day by day. I am not a religious person but I always rely on the statement that: "god does not give you anything you can not handle." This disease has taught me patience and strong will. No matter how much someone tries to understand, unless you have to live with this, you never will. So, just because you see a smile on my face, does not mean I am doing okay. My mother has taught me to hide my feelings, because lets face it, most people do not care "how you really are."

I worry everyday that I will wake up and not be able to walk or see or hear or talk. Will I be able to write or communicate? What will people think if I have to start walking with a cane? I don't want people to feel sorry for me, I just want understanding. Not everyone with this disease is feeble. Just because I can't remember a word, or a name doesn't make me stupid. I don't want to see pity and I don't want to be ignored due to ignorance on someone else's part. I am me and I will ALWAYS be me.

On a lighter subject I am totally going to try and get a copy of my MRI. I will totally post it here, look for the title: "This is your brain on MS" :)

Friday, January 28, 2011

Geez time flies....

When your having fun.

Went and spent our New Years at a friends house and had an awesome time. It's always good to be able to spend time and relax with friends. Jeff and his "pimp" hat made their debut. (rolling eyes as I type this. LOL) But all in all good times were had by all.

My mom was out of town visiting my brother in Georgia, so when went off to Jeff's parents house for Christmas. We unfortunately had to leave the dog behind and we were welcomed with a Christmas Morning picture of her from our Friends. (thanks guys :) ). I love spending anytime out there with his parents. I get the best rest and am the most relax when we are out there.

All and all everything seem to be going okay. Just now getting over a cold (or whatever you want to call it). Some coughy (I know, not a real word) thing. Still coughing, but feeling better. Went to see the MS doc on Monday, and had my anemia checked due to dizziness and falling. But was told it looks good. I am getting scheduled for an MRI sometime this coming week due to Myoclonus become more prevalent. They thought it was from my anemia, but since my numbers are good, they think there could be more lesions. Oh well we will see.

I wonder if I can get a copy of my MRI sent to me so I can post it??? HMMM!! I am totally going to ask my Doc. :)