How I got to this point!

Disclaimer: This is going to be extremely long since I am VERY long-winded! Maybe one day I will learn how to shorten this story up! Also I am pretty scatter brained so I might bounce around a little bit here and there! Bear with me please! Haha

It all began back in 2006! I was rehearsing for a show coming up at our local community theatre. A photographer was there to take pictures for the local paper and while running down stairs, shoeless, I slipped!!! Needless to say, I landed on my rear and bounce down a few steps! Fun! I bounced back up and continued going! I injured my foot which required a trip to the ER to be checked out but no big deal!

The big deal started over the next few days! Along with the giant bruise that arose on my lower back from the fall, I started having weakness on the left side of my body! So much so that I was having trouble walking correctly! So off to the Dr. again! He wanted me to see a neurologist and told his nurse to set it up. I was told they would call me in a day or two to let me know when and where I needed to go. I never heard from them and I was beginning to notice that it was slowly clearing up after a quick trip to the chiropractor so I didn’t worry about it and went on with my life!

Fast forward almost exactly one year later! There was still some minor weakness but nothing that bothered me enough to worry about. That is when I started getting numbness! It started in my mouth. I noticed it on my tongue, at first, and then it started spreading to the left side of my face and continued until the entire left side of my head was numb! There was also intense fatigue! I couldn’t sit still for any amount of time without falling asleep. Haha
So another trip to the Dr. was in order! They definitely got the follow-up appointment set up this time with the neurologist!!!

Ok! Before I go on, I have to say that, after hearing other people’s stories of their diagnosis, I feel kinda guilty telling mine! There are so many others that have been left in limbo for so long without knowing and went through test after test just to wait for weeks for an answer that I would have cracked and gone insane! But here is how it happened:

The day was March 6, 2007! I had my first appointment with Dr. Brown, my neurologist! He examined me. Asked a million questions. I explained what was going on and he threw out conditions that I hadn’t actually heard before such as Bells Palsey! He also threw out Multiple Sclerosis (MS)! I had heard of that but never exactly knew anything about it!

He set up an appointment for an MRI on the next day, March 7, 2007. This was the first MRI I have ever had! I had heard stories of panicking and feeling trapped so I wasn’t looking forward to this! I went in and my MRI went off without a hitch! I actually think I dozed off through most of it! Not a big deal!

I had a follow-up appointment set up for the day after that to get results! So on March 8, 2007 I went back to Brown’s office to hear what he found out! The words “You have MS.” hit me like a ton of bricks! Especially after his next sentence! “It is a non-curable disease!” Wow!!!! He immediately set me up to start on Rebif, a 3x’s a week injection! I just had to wait for a nurse to come show me how it works! He also gave me Provigil, a med normally given for Narcolepsy, for the fatigue!

Ok! We can deal with this! If the worst I have to deal with is some numbness and shots, we can live!!!
Boy, was I in for a surprise!!! I started my research into MS and didn’t like what I kept finding about it! In the few weeks that followed, I was started on the Rebif and I continued to get more concerned over my future!
What was going to happen to me? Was I going to end up in a wheelchair in the next few years? How was I going to be able to provide for my wife? Are these stupid shots ever NOT going to burn so bad when injecting? If not, this is going to suck for the rest of my life!

Insert a spiral into depression here! I couldn’t go one day without tears over the life I will never have again and the future life I was stuck with! I know that is a very unmanly thing to admit but it happened!!! But thankfully my wife was there for/with me for this whole thing! She called the Dr. to let him know what was going on. After another trip to see him, add Zoloft to my growing list of prescriptions!

I had been told upon diagnosis that there were support groups around to help deal with this. I wasn’t quite ready to admit that I needed “that kind of help” just yet! But it was becoming more apparent that I needed something more than antidepressants! So I finally broke down and called the MS Society to find out what was out there! I was directed to the local support group! I arrived at that meeting without any expectations and left with a list of new friends! That was the best decision I had made! It was somewhat comforting to see so many different people of so many different ages and disabilities! It was kind of mind-easing to see that having MS didn’t mean that I was definitely going to end up in a wheelchair anytime soon! So I highly recommend a support group for any of the newly diagnosed people that I meet!

Now to kinda skim over the next few years! I had a couple of rounds of Optic Neuritis. The weakness returned on my left side. And then disappeared! For each of these episodes I was given a round of high dose steroids to help get past the flares quicker! 1000 mg a day for four days will give you the energy of a toddler!!! It will also change the way food tastes, give you some very annoying hiccups and make you feel like you had been run over by a train once you quit taking them! Lol But you learn to just deal with it and do what you gotta do.

We had our son during this time! The greatest moment up to that point, besides being married to the greatest woman on earth, by far!!! Learning to be a parent and deal with MS is an experience! But we are surviving and wouldn’t trade any of it for anything!!!

Also during this time I decided that I had had enough of the painful Rebif shots! So I just took myself off of them! Not the best decision ever! Probably should have told my Dr about it but I didn’t! I was done with the pain! No matter whether I heated or froze the injection area before or after, heated or froze the injection itself, stood on my head and chanted a mantra IT HURT!!!! I went for about 3-4 months without anything! No shots! I had been taken off the provigil since it was raising my blood pressure through the roof and I slowly kept feeling like I was getting worse and I didn’t want to admit it to myself or anyone! My wife was getting more concerned over it and the fact that I wasn’t taking my meds! And after some deep, emotional discussions about the whole situation, I was pretty much given no choice than to break the news of no Rebif to my neuro! He didn’t like it but was understanding and set me up to take Betaseron. That was the nicest thing yet! It didn’t hurt! I could have injected that forever!!! I started to feel like a million bucks!!! I actually got back into the theatre thing again because I finally had the energy to do it! I was loving life again!

Fast forward to January 2011! All good things must come to an end I guess because I started to feel weakness again except this time it was in my right leg! Very concerning since up until now, it had been confined to mostly my left side! I tried getting in to my neurologist just to find out that he was out of the country! Seriously??? He was gone when i needed him the most!! Oh well I guess the er will have to do! I only went there since i was told from the beginning that the sooner you get treatment when having an exacerbation the better! The triage nurse almost needed the services of the er himself when I told him the normal round of steroids I get when having a flare! The er Dr apparently felt the same way because I just ended up with a medrol pack to last until Brown got back in the country!
I went and saw him shortly after his return and there was still no change! He started me on the steroids and it did get better for a short while!

The weakness had gotten so bad that it was affecting my ability to drive! So here I was not able to drive any longer and looking at steroid treatments that didn’t really seem to be working like they usually did!
My wife got tired of waiting and decided it was time to see a specialist! The closest one is about 5-6 hours away but something had to be done! We made the appointment with Dr. Okai in Dallas! First appointment was ok. She set me up for physical therapy saying that if I don’t do this, I wouldn’t be working much longer! *sigh* Not what I wanted to hear! She also set up another MRI for my brain and spine since she was afraid that I now had lesions on my spine!
I went for the MRI which was torture and for another blog post! It indeed did show that I had numerous new lesions in my brain and also now on my spine! She felt that the CRAB (Copaxone, Rebif, Avonex, Betaseron) drugs were not working for me anymore due to the number of relapses and new lesions that had developed! That meant I had to move on to one of the 2nd line drugs (Gilynia or Tysabri)!

Now Gilynia is the new oral medication which, after the injections, you would think would be ideal. However it had one major flaw in my eyes! The fact that it was too new was where my hang-up was. There was no way of knowing what was going to happen 5 years down the road. 10 years down the road? It was the big wide open unknown that, honestly, scared the sh.. out of me!

Then there was Tysabri. It also had a MAJOR flaw. The risk of the deadly brain infection, PML (Progressive multifocal leukoencephalopathy)! There were the numbers out there about the risks and, of course there were the statistics and that helps! It was known and it was documented! Haha My wife put it best when we were trying to make decision about which med to take. She said “God forbid anything were to happen but, if it did while on Tysabri, I could at least say that we knew the risks going into it! If it happens on Gilynia, the only thing anyone could say is ‘We just didn’t know!’ and that’s not good enough for me!” So that made that decision a lot simpler! Tysabri it is!!!

So that is pretty much where I am now! I go in next week for my third Tysabri infusion and so far so good with that! There are days that I think that the weakness in my right leg is getting better and there are days when I don’t feel so positive about that! The heat this summer is draining me quicker than it ever has! But I keep moving forward! Looking forward to winter! Lol

I thank you for reading and apologize if it was a little hard to follow! There are a few other issues that I will touch on in my next blog that I have also experienced but didn’t feel the need to go into in this one! Thanks again and have a Great day!!!

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12 thoughts on “How I got to this point!

  1. You are so amazing! You and your sweet Laura!! You inspire me to get up and go each day. I love you and I am glad you are “telling your story”. Aunt Pam

  2. OMG you have given me the inspiration to right a blog of my own.I have been told I do not share my feeling that is why I joined Twitter.. You on the other hand dealing with the MS and becoming a new father. The pride you family must have. I look forward to the rest of your journey.

  3. Hi my nme is Angela, I just read your story, Brings back memories! I love Tysabri, I was on it from beginning, then they took it off the market, (because 2 people died) then my Nero me off everything, I started Tysabri 6 moths later. Went through a couple years of it. The best thing I ever had. Then she took me off Tysabri a year ago, last August. I saw her last Jan. and just saw her again. I’m stable!! No Mri’s, no nothing. I still have MS but I’m doing good. Hopefully the Tysabri works for you, I knew about the PML, but took my chances, my nero also told me it was for Re-lasping Re-mitting MS. I am secondary progressive. So really took chances, it worked for me, thank goodness. Your story is wonderful! Try to keep up beat! Your doing good! Thanks for listening to me and I hope I didn’t talk your ears off.

  4. I’m happy to find you. It saddens me to connect with people through a disease, but here we are and together we are stronger….even if it’s only by reading each others words and writing back. 🙂

  5. Pingback: How I got diagnosed with Multiple Sclerosis – Scott Tomlinson tells his story

  6. HI! Ran across your blog through another MS blogger (really wish I could recall which one, sorry, can I use MS as my excuse?) I started my blog a few months ago, although I have to admit, I have been writing it in my mind since my DX in 2007. One of the ideas that I have been working on (that is NOT a new concept, more something that I would like to do) is putting together a site listing any and all MS related blogs, as an information site, sort of. I know that there are some out there already, but seems that some blogs are on one list and not the other, and I would really like to get as inclusive a list as possible (seeing as blogs do come and go all the time.) Would it be ok to add yours to my work in progress word document?

    Cheers,
    Meg@bbhwithms.com

  7. Hi! Thanks for your blog which is really inspirational! I also have MS and am doing some work for the shift.ms website which is a social network for people with MS. They are trying to promote a project that they are running called ‘MS Reporters’ and would like to get bloggers with MS to write about it. Could you drop me an email so I can give you more information? Thanks!

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