Living With Multiple Sclerosis

Blog will Be Moving. Please come to new blog

noreply@blogger.com (Penelope Marie) — Mon, 14 Dec 2009 19:56:00 +0000

I had too many blogs going on so I am downsizing to one blog. Please come over to the new blog for all updates.

http://penelopemariesmith.blogspot.com

This will be me updates and MS updates.

Thanks

Penelope

Its been a while but I have had a lot on my plate

noreply@blogger.com (Penelope Marie) — Tue, 04 Aug 2009 21:37:00 +0000

To put a long story short, I had to have some lady surgery which thrust me into a terrible relapse which just keeps getting worse. I had to withdraw from the study for some real treatment. I havent seen my MRIs in a year and a half and have no idea where Im at except I know my symptoms are worse. I have an appointment tomorrow with a Neuro about an hour out of town. The VA is now picking up the bill because they have rated my condition service connected. I am only getting 30% but the woman with Disabled Veterans is helping me with the paperwork to get 100%. I currently cant feel most of my body and have not left my room for 2 weeks because im doing good to get to the bathroom and back. My husband moved our mini fridge into our room so I have easy access to drinks and food which i usually pick up on my way to and from the potty.

I am worried that I am in Progressive MS. Hopefully they will request an MRI so they can see if my lessions are getting worse. I have learned that I need to start being more honest about my condition. I try to pretend as if everything is ok, but in honest it isnt and to get the treatment I need I need to lay it out as it is. I have been trying to protect my family and I guess my own sanity from worry but it has gotten to a point where that is just not possible anymore.

I plan to ask the neuro for a recommendation to the VA for a wheelchair. I bought a cane at walmart to help me get to the doctor but a chair would be so much nicer and faster. I also hope to get him to sign off on a handicap pass for my car. My mother was here for a month helping me and she has one and boy was it convient and helpful.

I will try to keep up with what is going on and maybe give some back info.

Penelope

Ever get tired of Doctor's Appointments?

noreply@blogger.com (Penelope Marie) — Fri, 01 May 2009 16:46:00 +0000

I have a long day on Tuesday full of many different doctors appointments. I am really dreading it.

I wish it were Wed already and it was all done!

So I Figured Out How to Know If I Have Missed a Pill

noreply@blogger.com (Penelope Marie) — Thu, 12 Mar 2009 23:05:00 +0000

Most of the time I cant remember if I have taken my pill for the day or not.

I have a hard time remembering what I am doing while Im doing it, so its hard to remember what I did 5 mins ago or even longer.

I usually take it, but just didnt have a way of know for sure.

I tried making a slash on the calander, but then I would forget to make the slash, so that turned out to be totally pointless. I also need to know what day it was if I did miss so I can tell the study.

I have figured out a way that will work with my memory problem.

I get 3 bottles of pills at every visit.
I open 2 bottles at one time.
I count out the pills for the month.
I put those in one bottle and all the rest in the other bottle.

This way if I cant remember if I took my pill, all I have to do is count the pills in the bottle. If I have 1 too many then I know I forgot to take it.

This is very helpful and helps me tremendously.

May not make sense to everyone, but it works for me.

I Almost Cut My Finger Off

noreply@blogger.com (Penelope Marie) — Mon, 26 Jan 2009 17:38:00 +0000

I would really like to blame it on the MS, but the truth is, Im just not very observant sometimes. The problem arises when I get focused on one thing and then not notice the other things outside of that.

The problem all started when I couldn't find my short scissors. I should have known better and just kept looking or do what I eventually had to do after I injured myself and go to the bathroom and get the little scissors in my manicure set.

But no, I just got the regular scissors and set off on my project. I was trying to cut yards of yarn. So I was sitting at the kitchen table while my husband was washing dishes, chatting and cutting lengths of yarn. So of course I wasn't paying any attention to anything else but the yarn and my husband. That is how it happened.

I wasn't paying attention to the fact that the long scissors extend far past the length of yarn that I was cuttting and ended up cutting my finger with the length of yarn. Luckily my reaction was quick and I dint cut all the way through. I was about a millimeter short of doing so. So I cleaned up and put a bandaide on and got the little scissors out of my manicure kit.

So now I have to get myself another pair of short scissors.

Twitter is Awesome! Try it out and follow me!

noreply@blogger.com (Penelope Marie) — Mon, 19 Jan 2009 02:50:00 +0000

For those of you who haven't heard of Twitter, it is a community of people that takes elements of myspace and a blog and minimizes it to 140 characters.

Users can post quick messages either to their followers or in replies to others post. The can only be a miximum of 140 characters, so it makes you have to get really to the point.

This is called a Tweet or a Twit.

I have seen this around for some time and finally decided to give it a try. It is not to hard to use and before you know it you are hooked. Even Obama had a Twitter account during the election. It is still up but hasn't had a Tweet since mid Dec.

It is a great way to connect with friends, customers, followers, or strangers. It only takes a click of a button to follow or unfollow anyone on Twitter.

There are newsgroups that will Twit the news regularly as well as many of the bloggers you follow are probably on there.

For those of you on Facebook, there is an application that will update Facebook with your Tweets. Now if they could just do that on Myspace, I would be killing 3 birds with one stone. Maybe it will come in the future and maybe we should send emails to Myspace to add it. If one exist that I do not know about, someone PLEASE email me.

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If you look to your right you will see that I included a whole section of just free Twitter resources. There are all kinds of apps, buttons, pictures, and more for Twitter.

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I accidentally took 2 pills yesterday!

noreply@blogger.com (Penelope Marie) — Thu, 15 Jan 2009 04:25:00 +0000

I take my clinical drug, cinnamon, cranberry everyday.

2 cinnamon, 2 cranberry, and 1 clinical drug pill.

Well somehow, I took out 2 clinical drug pills and downed them. I realized this as I was swallowing so there wasn't much I could do about it. Except make myself puke. Just for those that want to know, I hate puking almost as much as I hate needles.

I realized as in mid swallow that the pills felt way to sall to be either of the other products. But it took that information too long to process that they were down the hatch and gone.

I put a note in my calandar that I took 2.

You have to keep up with any pills you miss, or in my case when you take 2, and if you start or stop any other medications. You also have to keep up with any conditons that come up, but thus far, Ive only had a cold since I started this drug.

Another reason I think Im on placebo. Ive always had an exceptional immune system and this drug is suppose to take that down a notch. I have only had 1 cold and that was my husband's fault. He was convienced it was just allergies so I didnt avoid kissing him and drinking after him and next thing you know we both have it.

So I dind it humorous and think Im so brilliantly clutsy and just thought I would share that with you all.

My MS almost Ruined Dinner

noreply@blogger.com (Penelope Marie) — Sun, 11 Jan 2009 08:03:00 +0000

We got a gift card from my brother-n-law for this restaurant in town so we decided to go tonight. It's called Big River. Its a chain or branch of Gordon Birch which has several different places around the country with several different names.

We stopped at a used book store before we got there to do some trade ins. I found some great craft books, one in particular which is on my Amazon wish list. It was packed, as it usually is, and I don't know if the heat was on or there was just too many people in there, but it was warm to say the least.

I managed to get out of there without an issue, but I guess I didn't have time to cool off enough before we got to the restaurant. I didnt feel to hot when we got there or when we took a seat in the bar to avoid the line, but then it started coming on strong. I got a little fuzzy in my head and felt a bit sick. I stepped outside to try to get some cool air, but it was raining and all the smokers were huddled under the overhang.

I went back in and told the waitress that I have MS and the heat was making it bad. I felt so bad that I was going to ruin dinner. I almost started crying. We were sitting on bar stool without backs and there was a big light right on the whole table, so I asked her if we could move to one of the other tables as soon as one came available. She said yes and let us sit and wait it out.

She didnt have to do that. I know that time is money for wait staff. I used to be one, and I can totally relate. She was very understanding and didn't act weird or make me feel uncomfortable about the situation.

It didn't take too long for a table to clear out and we moved over to the side where the light was on my husband's side of the table and not mine. He had gotten me a wet papertowel out ot the bathroom to put on my face while we were waiting, went and got a pony tail holder out of the car, and I took my shoes of as soon as we moved table. I love my husband for being so understanding too.

After we moved I started feeling better so we could order. I could actually focus on the menu and concentrate enough to pick out something to eat. I didn't ponder on it too much though.

Im am very thankful for the waitress for being so nice and I left her and extra 5 bucks on top of her 20% tip. So she ended up with an almost 50% tip. She deserved it. She really help make the situation better.

In Regards to the Person Who Died During the Trial

noreply@blogger.com (Penelope Marie) — Fri, 09 Jan 2009 05:10:00 +0000

There is some worry and speculation about the drug and its side effects because someone in the trial did die. It is not as worrisome to others as it may sound.

The person in question lived in a foreign country where rules and regulations for drugs may be different.

We are under strict orders to not take any steroids without permission. For those not aware of the treatments for MS, steroids is given to patients at the beginning of a relapse to try to help prevent it from getting worse. It only works in the very early stages if it works at all.

You have to notify the study that you are having symptoms, go into them and be seen, and if they think you are indeed having a relapse then they will administer the steroids to you personally. This is for the sake of the study and to insure your health.

This person in particular got adult chicken pox, which in itself, is a very dangerous thing. Especially to someone who's immune system is already compromised. Thats what the drug does. That is what all MS treatments do. They take your immune system down so it will hopefully quit attacking itself.

This person took drugs at the study and apparently was taking other drugs that she had obtained somewhere else. This I do believe is the true nature of the problem. I do not think it was the drug alone.

I was notified by phone immediately and my trial nurse was very sure I understood what was going on before she got off the phone. Then there was a new line of paper work to include that people who have not had chicken pox will no longer be admitted to the trial. I had it as a child and a good case of it, so Im good either way.

Incidentally there apparently is now a clause in there about herpes because of someone getting treatment that contradicted the study in some way. I really didnt need details on that one.

That is the thing about studies. If something happens to 1 person, then that incident now becomes a potential side effect everyone else has to be checked for. So just cause they list a side effect, doesn't mean it happens a lot. It could have been just 1 person. They can't rule it out cause it happened why they are on the study.

You do have the option to opt out at any time. You are not in it for life. If you get really bad and need serious treatment, they will treat you and take you off the study.

I still like my odds with the pill and it's not a needle.

So my crazy hearburn is back.

noreply@blogger.com (Penelope Marie) — Fri, 02 Jan 2009 19:12:00 +0000

Every so often I get this crazy heartburn for a few weeks. Then its gone and I'm OK for several months. I don't get this heartburn and neither do the docs.

It starts our on a small level, which at that time I take some antacid and normally it would go away. Then there will be time where it just keeps coming no matter what I take. Even the types of medicine that you take regularly to make it not happen, like Prilosec and the like.

I call it crazy because it feels sorta like heartburn but on the right side of my chest not the left near my heart. There really just isn't anything over there. I think that's the part that makes me sound like a hypochondriac when I talk to the docs. Trust me, I am anything but. I am usually the last to go to the doctor thinking oh, its just nothing.

It doesn't hurt to breath, or move. In fact walking seems to help. Its doing anything remotely comfortable that makes it worse. I will get out and walk around, if its day time, and think oh I'm feeling better and can rest now, then bamm, its right back. It really sucks at night especially the early morning around 2am when its to dark to go walking and the drive to Walmart would just kill me. I live out in the middle of no where so everything is a trek. It gets incredibly boring walking around your house. I am thinking about getting a treadmill so at least I can watch TV and walk and maybe not be so bored with it.

Heat seems to help to. I usually get in the shower until the water runs cold which helps. Its not a cure but is sure feels better. I've tried using a heating pad, but its not very convenient. Its size is awkward and I don't really want the heat other than in one spot. I wish they made small round heating pads for spot treatments. lol.

Rubbing my back in the upper right area around where my scapula is helps too. I don't know why but it really seems to help. Also patting the area both back and front.

I have seen docs about it and most just want to recommend some type of diet suggestions or a Prilosec type drug. Ive tried to relate it to some sort of food, but nothing really seems to stand out. I get it no matter what I had for dinner or desert.

I have had a chest scan and nothing was there so there is no growth or anything like that. I'm not having any kind of breathing problems so its nothing with my lungs. Ive had too many lung tests so I'm sure they would have found something by now if it were related to my lungs.

I'm keeping yet another log to see if there is any correlation between anything. I have heard from some folks of a thing called the MS hug, but my symptoms don't really seem to match up with any of those from people I have talked to. Mine is pretty localized to one specific area..

Happy New Year All

noreply@blogger.com (Penelope Marie) — Fri, 02 Jan 2009 05:50:00 +0000

Im happy that year is behind us. It was so long and too much happened. lol.

I will have an appointment late this month. I hope to get everyone caught up by then. It will be a short appointment which I have come to love despite the long drive. lol.

Hope everyone's year is good and gets better every day!

Merry Xmas with a lil Oh Christmas Tree

noreply@blogger.com (Penelope Marie) — Sat, 20 Dec 2008 05:36:00 +0000

2 day first day

noreply@blogger.com (Penelope Marie) — Fri, 19 Dec 2008 04:38:00 +0000

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.

Getting Started

noreply@blogger.com (Penelope Marie) — Tue, 18 Nov 2008 23:43:00 +0000

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.

Making money for MS Society using messenger

noreply@blogger.com (Penelope Marie) — Fri, 14 Nov 2008 17:55:00 +0000

The Pre Tests

noreply@blogger.com (Penelope Marie) — Wed, 12 Nov 2008 19:56:00 +0000

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.

The study

noreply@blogger.com (Penelope Marie) — Fri, 07 Nov 2008 15:35:00 +0000

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

What came next

noreply@blogger.com (Penelope Marie) — Wed, 05 Nov 2008 01:41:00 +0000

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.

In the Beginning

noreply@blogger.com (Penelope Marie) — Tue, 04 Nov 2008 18:27:00 +0000

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.

New Blood Test Can Detect MS

noreply@blogger.com (Penelope Marie) — Sun, 02 Nov 2008 19:52:00 +0000

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

Hi, Nice to meet you!

noreply@blogger.com (Penelope Marie) — Sun, 02 Nov 2008 17:59:00 +0000

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