Day #2

Just finished up Day #2 of steroids! They kicked it into high gear and got me out of there in 20 minutes!

It was a nice Valentine's Day, spent time with Rodney & enjoyed some quiet time.

Slept ok, took the Ambien I was prescribed but still woke up a few times. Fell right back asleep and got up about 6:30 this morning. Not bad!

Signed off on the new drug. Got to see if our Insurance will cover it. If not then we have to look at assistance or a different method. I hope we can get it covered. Do NOT want to shoot up again! :(

Everyone have a great day! Only 2 more days of work before I get a week off in sunny San Diego!

Oh, also, planning on getting a team together for the MS walk @ Aquinas college on May 19. Once I get my team together I would love to raise $500! I will be contacting you! LOL

New drugs- Goodbye Trial

WOW! It has been a year since my last post. You would think that would mean good news right? Well I thought so!

Went last week to get my 1 year follow up tests: MRI, pulmonary, eye exam and physical. Well I was feeling great! I have lost almost 60# since March and have been having no symptoms.

Unfortunately I had 4 new lesions, 2 of which are "active" which should give me some kind of symptom like numbness or eye sight issues. Well I'm not! So that means, the trial meds are not working so I have to drop out of the study. Bummer!

So with that I am currently undergoing IV Steroids for the next 3 days. Happy Valentine's Day to me! The steroids cause some adverse effects: mostly sleeplessness and this nasty metallic taste in the back of my throat. I got plenty of Root Beer to take care of the taste and Ambien waiting for me at Walgreens.

Now I have to decide what to do with my med treatments. They do have a FDA approved pill called Gilenya. I really like not having to shoot myself up everyday. When I was on the Rebif I got these nasty splotches all over the injection site and they itched like crazy! I think I will start with the Gilenya and see if that works for me.

So for now, I am drug free. We leave for San Diego on Monday and no need to worry about those things until I get back.

When I do start the Gilenya, if my insurance covers it or I can get assistance to pay for it, I will have to hang out at my favorite Dr. office for the day so they can keep an eye on me. The drug can cause low bp and heater rate.

There is a plus of the trial, I have not paid for a drug in almost 2 years now!

So that is it! I am symptom free but I guess my MS is a little more progressive than we thought. I got lucky because one of the flare ups is almost in the same spot that caused my double vision. I got to look at my brain & yes, I do have one!

Thanks to my friends and family for their support during all this. I think this is going to motivate me to really get involved in MS research and see how they are doing. I really want a cure not just a preventative medicine. Hoping to work with my cousin to set up a Walk for MS team and collect some money for research. I have been handed this disease & I will not let it get me down. In a few days I will be in 70 degree weather, wearing flip flops & sporting my pedi & thinnerness!

Until next time! I will post once I start taking the Gileyna and tell you how it is going! :)

And so it begins....

Hi everyone!

So let me catch you up on what has been happening on the non-MS front first!

We will begin with Turkey Day.... I noticed some floaters in my eyesight. Thought nothing of it, but come to find out I have a very common occurance, only problem is it happens to people at about 40 or so not 30! The sack that is inside your eye is removing itself away from my Retina. My Opthamologist thought I had a hole in my Retina. Went to a specialist and it was just the shape of the floater. Have gone back a few times and everything is progressing properly. No tearing! I have a follow up in March.

Next would be me twisting my ankle @ work a week before Christmas! Fell on some ice and totally jacked up my ankle! Still recovering, no ice skating for me anytime soon.

Then good news! I am officially off the prism! It started to get better the day before New Years Eve! I was in the bathroom getting ready for work. Rodney was in the shower. He asked me for a towel and when I went to look at him, I only saw one of him! Phew.... I did not have my glasses on at the time. I ran into our room, ripped off the prism & holy smokes, I onlysaw one dresser, one tv, one cat! I had to wear it a few times after that but have been prism free for over a month now! Hoping to get back in to contacts soon but right now the glasses will have to do!

So after great news, come more bad news... Have I mentioned I am clumsy??? We went tubing with Lauren & Kevin. Had a blast! Until I ruined things. After about 2-2.5 hours I was just not paying attention. I went down the slope, when I got to the bottom I zoned out thinking I wanted a new tube. Well I did not move out of the way and here comes Speedy Gonzalez Rodney and he knocks me on my head. Oops! Went to the doctor, no concusion, just a good ol case of whip lash and a contusion... Got some drugs now I am feeling better!

So that is my life, so now on to the study!

Finished up the 3 month study a few weeks ago. So now I begin my 2 year journey on the next one. I will be acually taking the pill but we aren't sure of what dosage. I am on my last day of sitting at the doctor's office so they can check my bp and ekg me every 2 hours. So far so good. Great thing about this study is that I only have to get tests every few months instead of every month! I will try to stay more abreast on updating this thing I am going through.

Continuing the study

I had a follow up for my 2 month testing with Louis, my Nurse. I have an oppurtunity to get into another study! It would start right after I am finished with this one. Instead of 3 months thought it would be a 2 year study. Basically I will be given the drug we just don't know the dosage. I will have to do the 3 days in the Dr.'s office then MRIs every 3-6 months and follow ups the same amount of time. I think I will go for it! I need to either do it or look at a different option for meds. So far things have been ok, I guess we will see what happens once I am actually on the pill. More updates of course.

That's it for now. Just needed to get it out there. Everyone have a Merry Christmas & safe & happy New Year!

Month #2 Quick Update!

Hi everyone,

It has been chaos with the holidays so this will have to be quick.

So far so good, still taking the pills, just had my MRi for the month and go to see Louis next week.

Last time I saw her I decided it was time to get a Handicap sticker for the car. It is only temporary but it will help in the winter when the parking lots are wet and slippery. It has come in handy already! Used it a few times at the mall & Costco, as well as at Wicked! You wanna roll handicapped hang out with me! No but really it will help since I am not so stable.

Completely separate or maybe not I had another ye scare the day before Turkey Day! I went in to go see the Ophthalmologist to see if my nerve damage in my right eye was getting better. He did the test and although it is still there and I still need to wear the prism my eyes don't go all googly when I am not wearing my glasses.

So while I was there I told him I was noticing "floaters" in my left eye! They look like hair or things in your eyesight but it's something else. Come to find out due to my severe nearsightedness and possibly my MS I have a degeneration of my Viscus early. It normally does not happen until your 50 or so. Basically the Viscus is attached to your Retina. As you age it started to disintegrate and pull away from the Retina. It can cause floaters and usually go away. However if the Viscus sticks to the Retina it can cause a tear or hole! That is bad! Well the Ophthalmologist thought I had a hole and I had to go see a Specialist. He confirmed that I did not have a hole and explained all about the Viscus.

I went on with our weekend and had a follow up last week. If I start to notice more floaters or other weird things I need to go in ASAP so that we can make sure i don't have any issues. A tear can be fixed with a laser and very little recovery. A hole is worse! I would need surgery and will be out for at least a month for recovery. Not very happy about that!

So only a month left of the trial then I don't know what happens next. I will find out next week I;m sure. I hope everyone is having great holidays so far. Holla at me if you have questions!

The Trial Begins!

Hello! I am at the conclusion of my first week of dosing for the trial. As I type I am sitting at the Doctor's office for my last day of observation. Here is what I have experienced thus far.....

Monday took the pill. Now we don't really know if we have the pill or a placebo but based on 1 major side effect myself and the other lady I am doing the trial with we are both taking some form of the pill. We both had a loss of bp and heart rate. Sitting at the Doctor's office all day was very tiring. I got home and just wanted to sleep! I took a 2 hr nap after I hit the grocery store.

Day 2 same thing. Loss of bp and heart rate. I got home and took a nap as well. Just not motivated to do anything.

Day 3 had to go back to work. Started out my morning after a nice big stretch getting light headed then doing a head dive into my dresser and busting open my lip. It's a little swollen still but no biggy! I was realy crabby at work. Not sure if it was because of the pill or just getting caught back up.

Day 4 was better. Although I had quite a bit of caffeine! Walked with my mom and Rodney like we always do on Thursday.

And here we are at Day 5. So far so good! Got a hockey game tonight and Christy's wedding tomorrow. Caffeine seems to be a good thing so I think 5 hour energy will be my friend this weekend.

I guess that is it. Just an update on my tests. My MRI showed some activity which I knew would happen. Right before we went to Alaska I started having a relapse. It has lessened but still there. The only other test that showed something was my dermatology exam. There was a spot on my back that was discolored. They took a sample and said it is nothing to worry about. Being that I am not a sun goddess I figured it wasn't anything to worry about.

Well I will try to update every week suring the trial and let you all knowhow things are going. Toodles!

The Tests Begin

Yes, it has been a long time since I updated. Summer was busy! Before I start updating on the Drug Trial I have joined, let me inform you of my summer.

As you know I work at a pool store. Summer is always busy but I did get to enjoy some fun time; including 4th of July up in Oscoda, camping at Kevin's cabin and vacation in Alaska! It was fun, however I experienced a relapse 4 days before we left. I could nto go get the steroid drip so as of today I have very little feeling in my left arm. Made catching fish difficult! I tried in between my bouts of nausea and making my own chum!

Summer is over now so hopefully the stress will lessen and cause me to heal. I am still experiencing the nerve damage in my right eye so I still have the prism to correct my vision. I am driving quite a bit now but long distances and night time are still out. Frustrating the hell out of Rodney but he is coping.

Now, onto the Trial. This last week was full of Dr.'s appointments. I saw 6 different doctors last week.

My week started with meeting Louise, the head of the trial. She went over everything so I knew what I was getting myself into. I signed pages and pages of paperwork. I have a 8 in 9 chance of getting the bill and 1 in 9 of the placebo. Surprisingly diahrrea is not an issue that can happen with the pill. After I met with her I had to take a Neurology exam by "blind doctor" Dr. Visser. Blind does not mean blind but he didn't know me from Jane and could make a non-prejudice exam on me. He had the bedside manner of a piece of wood.

That takes me to Friday. I had 4 tests to take.

I started with a CT scan, never had one but it was quick and painless! There are times when I had to hold my breath so they could take pictures of my lungs.

Test #2 was a Pulimary test. That is where I get to sit in a box and breathe into a tube. That took about 45 minutes. Many of the exercises were repeated so she could get a good sample. I have great lung function!

Test #3 I'm not really sure what it all was. It was at the Opthomologist. Best part of that was the lady who brought me back had dark purple Chucks! She put the drops into my eyes to dialate them then left me in the doc's office. It was about 45 minutes later when the dr. showed up! Pretty sure I took a nap. He took some pics of my eyes then I was done, what a waste of time!

Test #4 was my fav, MRI time! Luckily they only took 4 pictures. However it took them awhile to figure out my IV. The tech who was in charge had never put in an IV. I needed the IV because they could not move me once I got into the machine. The IV was easier to inject the dye in. That only last 45 minutes!

Once those tests were done, we headed to the Cantina for dinner & margaritas. We needed them!

Monday was another day at the Doctor's. I had to get a couple of item attached to my body to check my heart rate and other body functions. I got those little sticky things with wires like they give you with an EKG. Had to leave that on for 24 hrs. Took it off this morning! It was a bitch to sleep last night. At the same time she put what looks like a huge bandaid on my boob. It measures my heart rate. I have to leave that on until Thursday. I have a little receiver I have to have within 30 ft of me at all times. Looks like a huge beeper. It blinks a green light so dark colored clothes at work.

My last exam as preliminary stuff is Thursday. I have to go to the dermotologist. Just gonna check my skin and will check it again once I am done with the trial to make sure nothing weird is going on with my skin.

Tha is it for now. My next big appt is Oct 4. We go over my results than set up the day to take the first pill. If I looked at the schedule correct, after my first dose I may have to spend a few days at the doctor's office all day!!! Boring!

If you have any questions let me know. I will update more often. Peace!