Frustrated With Multiple Sclerosis

Frustrated With Multiple Sclerosis

I guess it is time that I write about what is going with me and the Multiple Sclerosis because I haven’t really done an update in a while.  If you were to look at my you wouldn’t be able to tell that anything is wrong with me because everything that is going on is on the inside or at least if I don’t tell you anything is wrong then you won’t know anything is wrong.

For the last 2 or 3 months I have been exhausted to say the least.  I wrote a post earlier this week about how I am not sleeping but this exhaustion is so much more than just not sleeping.  It is so hard for me to explain the difference between being tired because of lack of sleep or being exhausted because of the MS.  I don’t think there really is away for me to explain it other than saying I am so tired that if I could stop breathing I would because that takes more energy than I have.

I know that my lack of sleeping isn’t helping the situation any either so that gets to me as well.  I just feel like I am falling apart and we have no reason as to why I am feeling this way.  I had an MRI done at the end of August and when I went to get the results my scanned showed that the disease hadn’t been active in the last six months.  Which should be a great thing but I felt confused and pissed off by it.  I really wish the scan would have shown something so that there was some sort of reason for why I am feeling the way that I am.

After my last appointment  I started on a new medication and I have taken it for a month and haven’t seen any change in how I am feeling so I don’t know if it is working or not.  She did say that I could take it twice a day and I haven’t done that yet because I already take so many pills that I hate taking more but I think I am going to try to take it twice a day for a couple of weeks and see what happens.

It is so hard having something like MS because it sucks when you can’t figure out what is wrong in order to try to fix it.  I have to wonder if I am going to have an MS relapse soon because this is usually how you feel before you have one or it is at least how I have always felt before one.  As of now I am “stable” but I don’t think I truly am.  There has to be something going on and it just isn’t showing up on the MRI.  My next MRI is in February and I see my doctor again at the beginning of March so we will see what happens in the next few months.

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Multiple Sclerosis Update

MSIt is time for another Multiple Sclerosis update.  I had an MRI in February to check and see if the MS was still stable and if anything had changed in the past 6 months.  For people who have been following my MS journey for me to have been basically in remission for the past 5 years is huge.  The disease has always been super active so Tysabri is definitely the medication I need to be on now.

We also discussed a couple of the new treatments that there are for MS and she gave me her thoughts on them and we also decided that since Tysabri is working for me that we won’t even consider changing treatments unless for some reason Tysabri stops working for me.  I personally don’t like what I have read and a few of the things she has told me about the medications that are now in pill form so I am not willing to give them a shot right now.

This is a short update but that is because nothing is going on and I hope to keep it that way.  I am going to write a post about what an infusion day is like for me so be on the look out for that in the next couple of weeks.

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Things That Drive Me Insane-Insurance Companies

Things That Drive Me Insane

 

I am sure everyone knows that I have Multiple Sclerosis and because  of the medication I use to treat it I have to get MRI’s every 6 months. I had my latest MRI on Saturday the 16th of February.  I received a call on the Friday before my MRI from my health insurance company and all I could think was great now what is their deal.

For a little back story I have always had problems with insurance companies.  It always seems like since they have to pay out for me they tend to give me the run around and what not.  One time a few years ago I actually had an insurance company make everyone that they paid money to send the money back to them and then I had to fight with them in order to get them to pay for the claims that they requested the money back for.  Lets just say that fixing the mess took over a year and I am still sure I paid to much on a few of the claims because I just got tired of fighting with them about it all.

Anyway back to the story  when I answered the phone they basically wanted me to change the place of my MRI because the place I was getting it done at wasn’t one of their preferred providers.  I was dumbfounded because  I was having the MRI the next  day and I know enough to know that there is no way that there would be an opening on a Saturday to get a MRI if most places even do MRI’s on Saturdays.

I understand why they called about it but they didn’t have to give me hard time when I told them that I was okay with paying more because my doctor works out of the hospital and it is easier for me to keep track of my records and what not if everything is done in the same spot.  I get that they want to save me money but if I am okay with paying more than they really should just say okay and get off the phone.

I am glad they were trying to save me money and everything but in the end if I am okay spending more money then just leave it alone.  I may spend more money for the MRI but it means that I don’t have to worry about my doctor getting the results or anything like that because she will be able to just pull them up in the computer.  I have had the scans done at other places before and it always turns into a big hassle when it comes to getting the results and things like that.  So that is the latest thing that drove me insane.

What is driving you insane this week?

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What Is Multiple Sclerosis


I am sure  most of you know that I have Multiple Sclerosis (MS).  I was diagnosed when I was 15 or 16.  I know that many people don’t know anything about MS so I am going to write a little bit about it in order to help raise awareness to the disease and to open peoples eyes to what this disease is.

  • Multiple Sclerosis is what they call an autoimmune disease.  This means that the persons immune system for some reason decides it is going to attack some part of the body instead of only attacking viruses and things like that.   In MS the immune system decides it is going to attack the nerves of the CNS (central nervous system).  The CNS includes the brain and spinal cord.  They are not sure what triggers the immune system to think that part of the body is a invader and needs to be attacked.
  • MS symptoms happen when the immune system attacks the myelin around the nerves.  If you think of your nerves like a wire the myelin would be the protective covering around the wire.  If the nerve underneath the myelin gets hurt that is what causes the symptoms and some times causes permanent disabilities.
  • The body tries to repair the damage that is done but it is never the same. Once the nerve is damaged it won’t ever function the same again.
  • There are a lot of different symptoms that go along with this disease.  I am going to list some of the most common ones: Fatigue, problems with walking, numbness, tingling, slurred speech, tremors, stiffness, problems with vision, cognition, speech, and elimination.  Every person with MS has different symptoms. Which makes some people wonder if everyone that has MS actually has the same disease or if it isn’t a few different diseases that just get grouped in with MS.
  • Anyone can get MS.  Women are more likely to get it than men and so are people with a lighter pigmentation to there skin.  So Montel Williams who has MS is a real rarity.
  • They think MS has a genetic link but they aren’t sure what it is.  In my case there is no one in my family history of it.
  • You usually get diagnosed between the ages of 20-50.  I was a rarity and was diagnosed at age 15 or 16.  Although younger patients are now getting diagnosed because doctors are starting to look for it at a younger ages.  I have noticed though that I have had lots of activity show up on scans but I haven’t had many flare ups that people could see.  In fact if I didn’t tell you I had MS and what symptoms I do have you can’t tell I have it all.
  • MS is rarely fatal.  Most of the time people with MS with get a common cold of the flu and that is what will end up taking their lives.
  • There are several treatments out there that each do things differently.  I am on one called Tysabri and it is the most expensive and most dangerous of the drugs.  All of the current MS treatments are expensive and it makes it hard for people who don’t have insurance or even with insurance to afford.
  • It has been shown that treating the disease helps  to stop the progression of the disease but since all the treatments are so expensive there are many people who simply can’t afford to treat the disease.
  • There is always new treatments in the works and exciting things happening in research that hold so much hope for future generations.  They came out last year with the first pill you can take once a day for treatment.  Up until the pill came out all the treatments were either shots or an infusion.
  • There is currently no cure for MS.

I think I  covered most of the major parts of the disease but if you have questions or want any more information please let a comment and I will answer your questions!

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Multiple Sclerosis Update

It has been a long time since I have written a post about Multiple Sclerosis and I really want to keep everyone in loop on what is going on with my health and all that fun stuff. Most of you know that I have an infusion once a month for my MS treatment. I take a medication that is called Tysabri. It is super expensive and can be dangerous but that is going to be another post. I was supposed to receive my infusion on the 23rd of September. That didn’t end up happening because the company I work for changed health insurance companies and I had to wait for a preauthorization to come through before I could get my treatment. So I show up on the 23rd and they send me home because of the whole insurance issue. For those that know a little bit about my job and what has been happening the the last 4 months or so you know that I can only take one day off a month because they have no one to cover the phones since they let go Misti who used to be my boss. So I knew I was going to have to wait a few weeks before I could take time off to go in and get the treatment once they got the approval that they needed.

My next infusion is on the 21st of October, which means that I have missed a whole month. Let me just tell everyone I have no idea how I used to live like this because I feel like crap. I always knew Tysabri was helping but I had no idea that it was helping so much. For the last 6 months or so I have had headaches and I also haven’t been in pain. Well since missing one month I hurt I have headaches and am exhausted. I literally slept almost all of Saturday because I was so exhausted from a normal week of work. I had to call my doctor and have her call in more pain pills because I was out and hadn’t need them so I didn’t bother getting a refill when I saw her last time. I feel so bad for people with MS that fill like this all the time. I am so glad that I have found an MS treatment that works for me and allows me to be a somewhat normal 26 year old. Also my hands are super numb right now and I am not sure if that is because I missed my treatment or just how the disease is acting right now.

I can’t remember if I wrote about my last MRI and doctor’s appointment so I am going to do a quick recap of all that information. I had my latest MRI in August and also saw the doctor after the results came in. According to the scan I am still stable and have been for about 2 years or so. They haven’t scanned my neck in a few years so when I go for my next MRI in February they are going to scan my brain and neck areas which means that it will be a super long and super expensive scan. I am interested to see if there have been any changes in the neck area. If there hasn’t been any changes that means I have been stable but if there are charges that means that I really haven’t been stable all this time. I hate the not knowing that goes along with having MS.

That is all there is for now. If anyone has any questions please leave them in the comments and I will answer them for you.
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Latest MRI

Last Thursday I had my latest MRI.  I get one every 6 months because of the Tysabri.  Lets just say that I know why they do it but it is a waste of time and money.  I could see if you where having problems but I haven’t been having any problems so it is just a waste.  Anyways lets to get back to the topic at hand.  I had it done Thursday and went to the doctor on Monday morning to get the results and see my neurologist.  We according the MRI it shows that I don’t have any new lesions on my brain but I am having more issues with balance lately.  Since we weren’t sure what is causing the balance issues she is having me get my necked scanned along with my brain the next time.  I hate MRI’s and adding the neck will just make it even longer!!!  It is so hard to stay still for that long.  My back ends up killing me and I always move a ton when they are doing the neck so they have to keep rescanning the same area.  Oh well it has to be done!

That is all I having going on right now.  I hope that everyone is having a good week!!!!!

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Fursday’s With Elinore & Sylvia. . . But First An Update On The MS

It is Fursday and that means it is time for me and Sylvia to post our thoughts and rants on what mom and the rest of the humans have been doing.
This is Sylvia speaking.  I was ready to kill mom the other night because she kept bugging me when I tried to sleep.  How hard is it for her to get that when I am sleeping I expect to be left alone!  I guess mom is “slow” because she doesn’t seem to get the fact that when I hiss at her that I don’t want to be bugged.  Last time I checked I thought it was pretty straight forward but maybe I am just smarter than the humans are.  Oh well at least they feed me and the gray haired man plays with me all the time.  I even get to supervise him while he is working outside in my yard.  It is a great life!
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I had my doctors appointment yesterday to get the results of my MRI that I had in February.  Well right when she saw me I got a lecture and was basically told to get over the issues with the new infusion site and go.  I asked her about what the MRI I had said and for the first time since I have been diagnosed I am totally stable.  There were no new lesions on my brain!!!!!!!!!!!!!!!!!!!!!!  This is huge for me because I have always had a very active disease and I always have had new lesions.  So after hearing that I am going to suck it up and do what I have to do to stay on the medication.  Even if that means jumping through hoops for the stupid drug company.

MRI DRAMA

WELL I WAS SUPPOSED TO HAVE AN MRI ON WEDNESDAY NIGHT BUT WE GOT A CALL ON WEDNESDAY NIGHT RESCHEDULING IT. SO AFTER I GOT IT THROUGH THEIR HEADS THAT I CAN’T COME IN THE MORNING THEY DECIDED TO RESCHEDULE IT FOR SATURDAY AT 11:30. FRIDAY WHILE I WAS AT WORK I GOT A CALL FROM THE UNIVERSITY OF UTAH HOSPITAL SAYING THAT I NEEDED TO PUT DOWN A $250 DEPOSIT IN ORDER TO HAVE MY MRI. I DIDN’T GET IT THEN AND I STILL DON’T GET IT BUT I HAD THEM PUT IT ON MY CREDIT CARD. SO GOING INTO SATURDAY I WAS STILL PISSED ABOUT HAVING TO PAY THAT MUCH MONEY WHEN I HAVE TWO INSURANCES RIGHT NOW. WE GET THERE AT ABOUT 10:45 BECAUSE WE WEREN’T SURE WHERE PARKING AND ALL THAT WAS AT HUNTSMAN CANCER. I GET DONE FILLING OUT ALL PAPER WORK AND THEY PROCEED TO TELL ME THAT THEIR MRI MACHINE IS BROKE. THEY HAD JUST GOT THE PART BUT WEREN’T SURE IF IT WOULD BE UP AND RUNNING ON TIME. SO WE SIT THERE FOR LIKE 20 MIN’S ONLY TO BE TOLD THAT IT ISN’T WORKING AND THEY ARE TRYING TO SEE IF I CAN GO TO THE HOSPITAL OR ANOTHER BUILDING TO HAVE IT DONE SINCE I WAS ALREADY THERE. WELL I KNEW I COULDN’T HAVE IT DONE AT THE HOSPITAL BECAUSE OF MY PRIMARY INSURANCE. SO I ENDED UP AND ANOTHER BUILDING THAT HAD A REALLY GOOD AND FAST MRI MACHINE!!!! SO THEY GOT ME CHANGED AND LAID DOWN AND WERE TRYING TO START AN IV FOR THE CONTRAST FLUID WHEN THEY WERE READY FOR IT. THE FIRST ONE THEY PUT IN INFILTRATED SO THEY HAD TO PUT ANOTHER ONE IN THE OTHER ARM. AFTER THIS POINT IT WAS SMOOTH SAILING FOR THE REST OF IT AND I WAS DONE IN 40 MIN’S!!!!!

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