Merry Xmas with a lil Oh Christmas Tree

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2 day first day

So we came back for the 2 day start. They said that they would reimburse us for the hotel, but we have yet to get it. We checked into our favorite line of hotels, Country Inn & Suites, which turned out to be an express version aimed at business people and really sucked for that chain. The usually have fresh baked cookies in the lobby. This one had what looked like store bought cookies and they were tiny. They normally have hot breakfast, but this place had stuff you could pop in the microwave and bagels and that was about it.

The first day we got there butt early in the morning so they could do all these tests and visit with both doctors so at about noon, they put on the monitor and gave me my first pill. They told me not to fall asleep because apparently low heart rate is one of the side effects they look for while they monitor you and being asleep can make you heart rate go down. So I brought my game boy and my laptop and tried to stay awake. My husband slept, but I didnt blame him. He was the one that drove us all the way there. They would come into the room every hour and take my blood pressure.

I never had anything happen that should have happened if I were really on the pill which is why I believe I am on placebo. I was there until 5 or 6 pm I think and then I was released to go to the hotel. They gave me everyone's phone number in case there was an emergancy. They really are good people that really seem to care.

We went to the hotel and checked in and then got lost trying to find somewhere to eat. When we got back to the hotel I pretty much crashed. I was very tired. Trying to sleep with a holter monitor on is not very easy or comfortable so I was glad to be so tired to not notice it. They told us we didnt need to come back until lunch time the next day.

The next day when we went back, they did more tests and checks and watched me take the pill. Oh and incase I forgot to mention, if you are a girl, you will have to pee in a cup EVERYTIME you go in. They have to make sure you are not pregnant. I have been on Depo so long I wouldnt count on it, but I still have to take the test. Its quite annoying. I wish they could just take it from the ton of blood they take every visit.

Since I wasnt showing any side effects they said it was going to be a short day. At the 24hr point with my monitor, they took it off, gave me my box of pills and a niffty calander/planner with stickers talored to the program. Like MRI, and all the other test you have to do. You get 3 months worth of pills at a time but they have a few extra in the bottle just in case there is a reason you cant get in on time to see them. You bring the whole box to every appointment and dont take the pill on test days until after you get there and they do all there bloodwork and tests.

You have to keep up with any days you miss pills, any meds you take, and you cant take steriods. Well you can, but it has to go through them. If its not a common over the counter thing I either call or email to find out. There is lots of paper work to read and inital too.

After all that was done, they snuck me out the side door. They want everyone else to be non bias about what is going on and not know enough to form an opinion of whether you are on the pill or not. They said they would pretend to check up on me as the day went on. So we were on our way back home. We were glad to leave early and beat all the traffic home. There is always traffic in Atlanta but some times are really bad.

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Getting Started

After they got all the stuff back and I got approved, they set up my 2 day appointment. You have to be observed for 2 days in a row. They reimburse you for the hotel, which its been since May and we still havent got our money back. So we booked the hotel, my husband got the days off and we made our way down there.

By the way on a side note, Coke World is in Atlanta if anyone goes. My husband is obsessed because the have this certain kind of soda you can only get in Germany there. We have been almost every time we have gone.

We get down there super early. I start off all good. Pee in the cup, they take my blood, I see the study doctor and the blind doctor. Do some other tests, Get my holter monitor put on and then finally the pill taking time come. She pops open the bottle pours out the pill into her hand and then my heart just dropped!

They were RED!

Im allergic to red dye and severely allergic. I get food poisoning like effects. I came all this way and now I was going to be disqualified because of the stupid capsule they have to put it in. Why do companies need to do this? It really pisses me off.

So they tried to look it up and make phone calls, but couldn't get anyone. So they told me that there was another study for a pill that I could do if this one doesnt work out but I would have to start all the tests over again because its a seperate study.

Great! I really contimplated what I was going to do. I don't want to do the tests all over again but I CAN'T take a shot. I was so upset. We popped off the monitor and left for Coke World. On the way home they gave me a call telling me it is not red dye. Its that stuff that is in heart burn medicine that ends in oxide that is just naturally redish in appearance. But the window had passed so we had to reschedule.

Two weeks later we would have to come back and do it all over again. We had to wait two weeks, so the month would be a new and my husband would have more days to take off. My mom offered to come and take me, but I really can't be away from my husband in these kinds of moments. Its cheesy, but he is my rock and keeps me from freaking out. Plus she ended up having to come up and stay with our daughter cause she had state testing.

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Making money for MS Society using messenger

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The Pre Tests

So now that they said I can do the pre tests, I was so happy. I was so relieved I could post pone the shots. I was hoping all would be perfect and I would be allowed into the test. The tests took a couple months. Mostly I think because of our schedule. We live in Chattanooga and the tests were in Atlanta which is a 2 hour average drive. They tried to schedule as much in one day as possible. My husband had to drive me and he only gets so many days off at a time. Bless his heart, he blew through all his days taking me to the doctor.

I had to get a lime disease test and lupus test here because it was in my Neurologists papers that she recomended it as a just in case measure. Those two diseases apparently can mimic a lot of the same symptoms. But looking at my MRIs, all doctors have had little doubt about my condition. Especially with the previous relapse I had the prior year. The refered to the term "textbook" when looking at all my symptoms and tests.

The tests in Atlanta were a chest scan which scans the heart and lungs. A MRI for them. You have to go do breathing tests, which has an official name, but it escapes me at the moment. You go to a dermatologist to record your moles and sizes. An increase in cancerous moles is a possible side effect, but is one I wonder if it is wide spread or was it something one person got and now will forever be a side effect. The doctor looks at all your moles and records the size, shape, etc. If there is anything she didn't like she removed it. This is covered by the study. I thought being a fair and practically see through as I am and having several little moles and freckles she would find a ton that she wouldn't like, but she only found 2. They were painlessly removed. Trust me when I say that. I am a big baby when it comes to stuff like that and I felt nothing.

There are several tests that you do that you will repeat a bunch of times that test your cognitive abilities, reflexes and stuff. Plus if you are a female you will pee in a cup every time you go so they can do a pregnancy test. They also take blood and run an ekg to check your heart every time too. There are a couple of times you will wear a holter monitor too. Which is like a portable ekg. You wear it for 24 hours. You do this during pre-test.

You also go to the eye doctor in pre test and often times after. This is really the most annoying of the tests. It is because the service is so slow. You spend 2+ hours waiting for a 5 min appointment. The pre test does a scan of your eye and looks to make sure its healthy. Its easy. I call it the light show. You look in the eye peace and follow the light where they tell you and it scans your eyes while you are doing this. The other part, which is the repetative part you will do tons of times, is they dialate your eyes and then the doctor will look in them.

The chest scan is only repeated at the end of the 2 years. The skin test is repeated at 1 year mark and 2 year mark. The MRI is done every 6 months. Everything else is repetative. You get a execl type chart with what is done when and they schedule me out almost a year in advance.

After all these things are done then you wait for results. They have to send all the stuff to switzerland or norway for the company to review all the info. They make the final ruling and then mail out your drugs and paper work to the study location.

I did get a copy on disk of my chest scan and they could talk to me about things going on during this time, but I was told I will not be informed anymore after I start the drugs.

The skin doctor too, said that if I had something I wanted removed, I could do it on my next visit for $25 each. So I am saving. I have 3 I really want removed because they are in bad locations that get scratched a lot. I also have a few red dots that have an official name, but are basically renegade blood vessels. She said that she could fix those to for same price. So I am saving for my next visit to get as much work done as possible. lol.

This all took about 2 months.

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The study

This is the official link for the study where you can get some info and apply.

http://www.msclinicaltrials.com/index.html

This is another info page which is a great place to search for clinical trials.

http://www.clinicaltrials.gov/ct2/show/NCT00355134?term=novartis+AND+fty720&rank=12&show_locs=Y#locn

The trial is still taking applications. It is a 2 yr study. All medical stuff is covered.

For those that are interested but dont want to do the trial here are 2 articles that both list a 2009 date for filing for Novartis and this drug. Novartis is the company that owns and will sell this drug. The US gov has already said it will fast track these drugs which mean 6 months are less approval. So that means sometime in 2010 this should be available to the general public. Might want to ask you doctor about this so they are aware so you can get it as soon as it hits the market.

http://www.thisisms.com/article280.html

http://www.medicalnewstoday.com/articles/85415.php

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What came next

The whole way home from the doc I was upset. I didnt know what I had or what was going on. He told me he would have to send me to a neurologist for official diagnosis. He also mentioned there was not anyone really good with dealing with MS in the area. He said that there was one lady but she takes 6 months to get into because she is highly saught after. He scheduled me with that lady and another doctor he said was the next best thing to get me into treatment asap.

When I got home I immediately went to my computer and started researching everything I could find about. I didnt like the treatment options that were available. I don't do needles. I kept hoping there was a secret pill I was just missing somewhere or that I wouldnt need anything. Once I found out what MS was, I honestly wasnt too surprised. Ive always had a rather psycho immune system since child hood. I heal at miraclous amounts of time. So finding out my immune system was on overload and attacking itself wasnt too shocking.

I got a call from my doc that the lady doctor came open and I was going there. When I got there, I saw a lady, but it was not the right lady. I think the secretary scheduled me with the first neuro open in that office and not the right doctor. Needless to say I did not like this other person. She was very impersonal and treated me like I was a waste of her time. Through the paperwork for the rebif shots at me and told me there was no other options. That was the 2nd and last time I cried over having MS. She did mention that she would support me to do a trial, but thats all she was offering me.

So as soon as I got home I was back at the computer searching for clinical trials. I found several in Nashville and Atlanta for several different pills. I applied to them all. The next day I got an email from the Fingolimod study in Atlanta. They were happy to hear from me and wanted to send me the info pack. Once I got the pack I reviewed it and gave the lady a call. She went over it with me and wanted to make sure I was OK with being on placebo possibly. I told her its either this or no meds so Im ok with being on the placebo if it happens. I had to send all my medical info down there to them and once all that was a go, they scheduled me to come down. I had to do blood tests and see the doctor and take a pregnancy test, which I have to do every time I go there.

The doctor was a bit worried about my condition and said if I was his patient, he probably would be recomending a lot of other things besides this study. When I told him I didnt like any of the treatment opptions and was going to go med free, he said I could do it. I had to promise that if I got worse that I would let him treat me. He was thinking chemo. I was a little shocked that he thought I was so bad when the neuro was so dissmissive of me. I have lesions in every part of my brain and they are active. I guess when people look at my MRI scans they think I should be in a wheel chair or something but I feel fine.

After approval I was scheduled for all of their pre tests. The study requires pre-tests of all sorts. These are the only ones you get to see or know anything about. After you start the drug, you are no longer in the know unless something bad happens.

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In the Beginning

Since I'm deep into the clinical trial, I am trying to back track to the beginning of things to catch everyone up to speed.

My migraines started about 5 years ago in my last year in the service. I don't know if this is related or not, but I had never had migraines before and have had them on and off since. I was feeling really nauseated with the migraines and when I had to go to the doctor about it, they gave me 800 mlg IBProfien and Phenegen and a quarters slip and sent me home. That was pretty how I delt with it for then next 4 years.

NOTE: Taking a half or a 1/4 of Phenegen will give you the nasuea supressing effect without knocking you out cold.

Last summer I started having facial numbness. It started out around my eye area and then progressed to my forhead and then consumming most of the side of my head minus my mouth and down. Not having insurance at that moment, I WebMD myself and the only thing that came close to it was Bells Palsy. It said it lasts on average of a month. I gave myself a month and then I would go pay for a doctor. My husband was great, massaging my face during this month because thats what the computer said would help. It DID go away after a month so I thought nothing of it.

6 months later, I picked up a job. Keep in mind I was in school full time as well. So I was going to work from 9-5 and then to school 6-9ish 3 nights a week. This proved to be just to much for me. My migraines came back with a vengence until I almost passed out at work. This time I did have insurance so I went to the doctor. He started giving me treatment for migraines. He gave me Topamax and Frova. The Frova seems to work, but you have to catch it as soon as you are getting a migraine or it is worthless. If you are busy and cant get to it in time its far to expensive to bother with. Plus my migraines were far to frequent. The topamax did cut down on the severity a bit, although I would still have some woppers. It also cut down on the frequency but not by much.

Needless to say I had to quit my job. I applied for some desk jobs for the state since I get preferance because Im a veteran. That never panned out despite being 2nd on the list for the state with my scores because the state is broke. They are actually laying off people and trying to get people to retire. So hiring is suspended indefinately.

My dosage of topmax, kept getting increased till I could barely concentrate on anything. I went to my doctor for a change in meds, becaue the Topamax was just not working. He decided to opt for an anti-depresant called Selexa. He had me taking both since he wanted to wean me off of the Topamax. The first day was odd, but that was to be expected. The next day was worse, and the third day I could barely walk and almost fell off the toliet just trying to go to the bathroom. My husband had to help me back to bed. Luckily I have my trusty phengen to save me. I went cold turkey on both meds because I was one step away from going to the emergency room in misery.

That is when then facial numbness started coming back. I thought oh no not this again. How annoying. This time it incorporated my mouth which made eating difficult because it totally ruin the taste of everything and my vision which made driving scary and in retrospect was probably a bad idea. But I didnt have much of a choice. Which is why Im moving back to Mississippi near my family so there is someone there to drive me when I have to go somewhere and my husband cant take off for a week to help me.

It also spread to my leg which was acward. I had to put forth effort to walk without look drunk. I made it through class although I couldnt look at the teacher often because the vision thing was totally tripping when I tried to focus on anything. My handwriting was even off. I had no problem in my hands, its just amazing how many things rely on your vision.

I was expecting some withdrawl symptoms from going cold turkey, so I gave it a week or so about close to 2 by the time I got in to see the doc. I just wanted to know how long these withdrawl symptoms were going to last. He wanted me to see an eye doctor and have an MRI. Well the eye doctor said he wanted an MRI too. The MRI took weeks for the insurance to approve so about the time I went in for the MRI I was almost symptom free. I thought way to be on the ball docs.

The MRI took forever and was completely boring. We left the hostpital and went to get something to eat at the Arby's. While at there I got a call from my doctor's office asking me to come in to the office. So after we ate we stopped by their office. I thought it was just to go over the results and send me on my way. Well we went over the results and he said that I have MS. He was not that blunt about it, I just shortening the conversation. lol. That was the first of the 2 times Ive cried since Ive been diagnosed.

That was Feb 08.

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New Blood Test Can Detect MS

Thought this was really cool. Considering all the other methods some doctors put patients through and still can't make up their mind, maybe this will help.

http://friendswithms.com/blood%20test%20to%20detect%20MS.htm

Penelope Smith
penelopesmithbooks.com

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Hi, Nice to meet you!

Hi, I’m Penelope.

I’ve only been diagnosed with MS for less than a year at this writing, but boy has it been a long year. I know that I have had it longer then when I was diagnosed because of things that happened previously. I am on a clinical trial for fingolimod which is a pill. I am in the 3^rd stage of the trial. I officially started receiving the drug in May of this year.

A little about me.

I’m originally from Gulfport, Mississippi but I have been back and forth from coast to coast. My travels began when I joined the US Air Force. That took me from Texas, to California, back to Mississippi, then last stop in Georgia. After that I left the service to move back to California to become an actress. Los Angeles was interesting to say the least. Hollywood turned out to be too much like high school politics so I decided I was done. Before I could leave, however, I met my soulmate. I stay a year longer and then we moved to Tennessee together. It has nice weather and is a lot cheaper.

After a year here in TN, I was diagnosed with MS. This really makes you sit down and evaluate your life. You realize you may be doing things that don’t make you happy or fulfilled. I decide I was going to pursue my dream of writing and inspiring people. My first book is due out in Dec. It is a dating guide for guys. That one is for all the guys who told me all my life I should write all my advice down. The second is due out in Feb 2009 and is an inspirational and humor book about cats. It’s meant to make you laugh and smile. I also have many more ideas for more books. It just seems to flow which makes me believe even more that I am on the right path in life.

Penelope

www.Penelopsmithbooks.com

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