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!

Double Vision Cure?

Ok I said I wasn't going to do this until next week but today had a great ending! I had to go and gwe my annual check up with the Eye Dr. I told him about the Double Vision and he brought out these magical prisms that when put over my right eye the double vision went away!

I have a nerve issue with my right eye that is causing the double vision. I had a feeling that it was the right eye because when I put the eye patch over the left eye I had some bad balance.

So back to the magical prisms! After he did my regular eye exam he explained to me how the prisms can help with the double vision. He believes that the nerve issues should get better so we are getting me a little stick on prism for my glasses. It costs about $30 and will stick onto my right side of my glasses.

So that sucks that I have to keep wearing my glasses since I have practically lived in my contacts contacts for the last 10 years! But hey I will be able to drive and feel normal!

I get my magic prism stick on hopefully next week so only a few more days of having my wonderful hubby drive me around. I know he is getting sick of going to the grocery store!

If my vision is to get better the magic prism will cause me to get double vision again and I can get it removed. If it is to stay I may have to get a special pair of glasses that will have a permanent prism in my glasses. Those cost a lot and I am not really sure if it is covered under my Insurance. It should since it is a part of my disease.

On a side note.... Thanks to the eye patch I found out my favorite delivery driver, Ron, has had MS since 2001. He has issues with his right eye as well and that was how he found out he had MS. I finally know someone personally who has the same disease as I do. He offered his love and understanding. Thanks Ron!

I will blog about what happens after the appt. with the Neurologist on Monday. We got the MRI results back and everything looked good but I still think I am going to talk to her about the trial. If I have to keep doing the shots I will.

3rd Flare Up & More

Hi everyone! This is going to be the easiest way to get everything out.

This post needs to begin around my Birthday! As you may have know I turned 30 on March 25. I decided to celebrate with many of my friends with a hockey game and a little get together afterwards. We partied hard! Apparently I partied too hard because I got my first cold of the year that following Tuesday. I thought I was quite lucky this year. Hadn't gotten sick at all this winter. My luck would let me get sick when it was 80 degrees out! I took it easy last week, even had to stay home for Rodney's 31st bday celebration last Saturday. Was sleeping by 10:30 pm on Saturday, lovely!

I was feeling better on Monday, still a little snotty but not sneezing and had bad congestion. I thought I was on the mend. Wrong! Tuesday came around and when I went to go get my emailing done for work I was finding it hard to concentrate on the screen, like I am now, but figured it was still the congestion. Drove home that day and noticed my depth perception was off. I was supposed to drive to The Score for Rodney's b-day Dinner. He was 31 that day! Had to have our friend Ken drive instead. I didn't want to put anyone's life at stake. I will call the Dr. in the morning to see if maybe I have an ear infection.

I was always susceptible to Ear Infections growing up. I have small ear canals and they are slightly twisted. They were so small I could not get Tubes in my ears. :( So Wednesday morning I call my PCP (Primary Care Physician) to get the Ear Infection ruled out. I had an idea in the back of my head that this was probably MS related but I need to get everything checked out.

Drove to work on Wednesday, no change. Had an appt set up for 3:15 that day and as I was driving home I noticed I had double vision. I was already driving slow due to the depth perception but this was making it worse! Nothing like seeing 2 semi-trucks coming your way and not knowing exactly where it is. So saw my PCP and she ran all the necessary tests. No Ear Infection, a little fluid, but unfortunately she says it is another flare up. Normally the office requires you turn your cell off but she allowed me to use it to call my Neurologist immediately. She put me on driving restriction except to get home safe. Luckily the PCP office is close to home.

Hello today! Due to the restriction I need rides everywhere. I hate it! My mom and little cousin Julia took me to the Neurologist. My regular Dr. is on Spring Break this week so I get to see his RN, Louise. She confirms this is another relapse. Lots to figure out now.

I am currently doing a 5 day IV drip of steroids to get the eye issues taken care of. The meds can fix me up soon or could take me a few weeks to get back to normal. Louis put me on work restriction due to the double vision. It would be very difficult for me to work. I can't concentrate for long periods of time. This blog is taking quite awhile due to the fact that I need to look away often to keep the screen from moving.

So my weekend will be filled with IV drips. I only had to do 3 days last time in October but since eye sight is more important than the numbness of limbs we are hitting it hard! Due to the fact that I am still getting over an illness the IV may have some adverse effects. It could actually cause my body to increase the symptoms of my cold. I may end up in Emergency this week or next if things get bad.

So the IV treatments are no big deal at this point. I actually was tired today and took a nap when I got back from lunch and running my errands. Louise prescribed me a sleeping pill because this next week is going to be hard for me.

So now that you are updated on that let me bring you up to something else. This would be my 3rd relapse since Feb 2009. That is not good. When I had the last one in October I had to get an MRI. That showed that there was no more lesions and we had decided to stick to my Rebif treatment. The Rebif, if it was working for me, would slow my relapses to 2-3 every 3 years. Well 2 in 1 year is not good. So going in for another MRI on Wednesday. I am going to have to switch my meds.

I have a follow up in 3 weeks with Louise to look over the MRI and to talk about the new meds. She also drew some blood today to see if my Vitamin D levels are good and if I need to start taking a supplement. Vitamin D is what we get from the sun. Since we don't get tons of sun here in MI people are more susceptible to MS. Not to mention my body has never dealt well with the sun. SPF 60 here I come! I will know more then.

So now I need to decide what is going to be the next plan of action. I have 3 options.

1. Switch meds to Copaxone. It is another Interferon like the Rebif I am taking. However I need to inject everyday! Louise thinks that if the Rebif is not working it may not do any better.

2. Get myself involved in a new drug trial. They are working on a pill form to help reduce flare ups and lesions. I would be involved in a 3 month trial which would include lots of testing like more MRIs, urine tests, blood tests and many other tests. All these tests would be paid by the Drug company sponsoring the trial. During the 3 months I may be on the actual pill or a placebo like most trials. After the 3 months I would continue to be on the pill and more than likely have more tests.

3. The last option is Tysabri. This is an IV infusion that I would take once a month. This is not an Interferon like most of the drugs. It is an antibody. It inhibits my White Blood cells from getting into my brain and attacking nerves. This would be the last plan of attack. It has 1 big draw back that happen to about 1 in 1000 people. It can cause PML or progressive multifocal leukoebcephatlopathy ( I hope I spelled it right!). It is a rare brain infection that can cause death or sever disability. There is no treatment, prevention or cure for PML. So MS would be the least of my worries. I need to do more research on this drug but leaning more towards no..... The Tysabri should only be used for 2 years.

So without doing a ton of research yet, my eyes can't handle it, I am leaning more towards the trial. Yes it will take some time out my life. The first day I take the meds I need to be at the Dr.office all day for testing! But I want to do more research on everything.

When I first got diagnosed I thought no big deal but I guess I need to re asses that. I appreciate everyone reading this and thanks for letting me get it off my chest. When I got for my 3 week check up I will put up another post and let everyone know what the deal is.

Love you all!

6 Month Check Up

So I just went for my 6 month check up with the Neurologist. While I was there lots happend!

1. I walk in the door and he asks if I have gotten my flu shot yet. Well no, so I am on a mission to get the H1N1 flu shot when it becomes available. I am a perfect candidate to get it. Under 34 and I have an Autoimmune disease. So I got my regular Flu Shot today and now will call & bug the Health Dept until they get their doses in. I also just found out that one of my co-worker's kid has it so I have to be extra careful. He may not have any symptoms but he may be caring it.

2. I told him that I have had 2 relapses since July. One of them is still pretty prevalent, I was quite scared of doing the Steroid treatment due to all the side effects. He says my left hand may never recover it may always have the tingling. Only time will tell. The most recent one started 2 weeks ago Tuesday. It is all over numbness. The only thing right now that is not numb is the right arm & my head. So he recommended that I get the Steroid treatment! Yeah! It consists of 3 days for an hour.

3. Steroid treament is a biotch! My first was on Friday morning before work. I sat for an hour with an IV hooked up with 100 mg, I think, of Solumedrol and a saline mix. While it was happening was no big deal, what's another needle when I get to inject myself 3 times a week anyways. So they insert the IV but instead of leaving the needle in there is a pvc tube that is left in my arm. Not sure why they use that vs the needle but it definitely is not as sore. After effects were all day. At first it was hot sweats (now I know what it is like to go through the change) where I was peeling off clothing because I was sweating so bad even though it was freezing! I got lots of energy which was great. Got lots done! The night however was terrible. Rodney & I tried a new place, Wing Heaven (awesome BTW). Well the combo of the wings & the drugs has kicked in some major heartburn! We were basically out of Pepto so I tried the good ol Rolaids, did nothing. To make things worse I couldn't fall asleep my heart was beating way too fast! So as I am laying awake @ 2 am I almost made a late night trip to Meijer for Pepto. Toooo Lazy! Got about 3 hours of sleep last night with no outlook of rest for the day. I went for Trip #2 this morning. So far not too bad. Heartburn still going! Stopped @ Meijer stocked up on Pepto, Tums & Sleeping Aids. Big Griffins game tonite & a house warming party. Can't drink so Mrs. DD to your service. Tomorrow is the final dose. Going to a movie with Sarah and hitting the grocery store. Hoping I can get some rest before the work week begins. Very glad that I decided to get these doses during the weekend or there would be sheer hell @ work I think.

4. Finally, MRI #3 for the year on it's way! Due to the fact that I have had 2 relapses in the last 6 months, the Neurologist wants another MRI to see if my Rebif is doing what it should be. Could just be a fluke I am getting them so close together; stress, etc.... The average is 1.6 relapses per year. I am still taking the Rebif he wants to look at the scan first to see if I have any new lesions. That should hopefully happen sometime next week.

So MS sux if you didn't know. I am living everyday though. Had a few bad days last week but I am feeling better, except for this damned heartburn! I will update once I get some news about my MRI and hopefully by then I will be anti- H1N1. :) Thanks for all the support to my friends & family. This is going to be a long battle and I am glad you are all here for me in your prayers, thoughts and kind words.