MS & I

Thursday, March 2, 2017

post treatment...

It has been about 3 weeks since my 5th and final Lemtrada treatment and to be honest and pardon my French here, but I feel like total shit. The good news is this is normal. Within a week of therapy I found myself in bed all day, which is not as good as you would imagine. The simple task of getting out of bed to use the restroom seemed impossible. Once I finally made it to the restroom and back to bed I felt like I just got done running a marathon, feeling that it took just as long as a marathon as well. 
I was relieved after speaking with my doctor that I should feel like “I was hit by a bus”. Well guess what?! That is exactly how I feel! So in a weird way, I was glad/almost happy to hear I felt so horrible. Like I knew the drug was doing what it was supposed to do. Completely destroying my immune system. 
Yesterday I made the trek to my MS doctor to talk about blood work and other testing I had done. The good news (that doesn't sound like good news) is that the medication did exactly what it was supposed to do... I no longer have an immune system. My levels were so low in fact that the hospital lab called my doctor to inform her that I am anything but healthy, and that my immune system was no longer functioning.
So why is this a good thing? Well the whole point of this treatment was to wipe my immune system clean (my white blood cell count is none existent) so that my body will hopefully re program its self to stop attacking my nervouse system. Thus the term autoimmune disease. 
So as of right now I am under a sort of quarantine as I try to avoid any type of virus. I should be a hermit, but I am really struggling with the thought of never leaving my house. The only problem is that when I do try and venture out, my entire day and body is completely wrecked. 
Over the next 12 months my body will be working on rebuilding the white blood cells and their ‘subsets’. 
My doctor reassured me that in about 3 weeks I should start feeling like myself again. Even though I will defiantly still be dealing with the effects of MS. It wont be for about 3 months I will finally start noticing the positives from this treatment. 
So until I am clear to join society again, I will try my best to rest and let my body learn how to act properly again. 

Wednesday, February 8, 2017

5th & final treatment...


Today marks my 5th and final day of my new treatment, Lemtrada! So why did I start a new treatment? For the past almost 5 years I was on the infusion treatment Tysabri. Everything about this treatment seemed to be going great until I had Sawyer. 3 months after giving birth I started to notice the all too familiar symptoms of MS. Soon I resumed my infusion treatment one a month. While at first I was hopeful that the medication would possibly kick in 3-6 months after starting treatment again, but one year later I was still suffering from the terrifying MS symptoms. while voicing this concern to my doctor, she informed me of a new drug that was awaiting FDA approval. I waited & waited until the drug was finally approved. Unfortunately my doctors concluded that the this new treatment would include side effects that would greatly outweigh the benefits. As I mentioned in my last post, I found my self practically begging for something new. My understanding doctor was quick to give me two options, start the risky treatment that they preferred not to use or wait again for another treatment to be FDA approved. After contemplating the possible risks, I decided to begin the treatment Lemtrada.
just some of the RISKS- Infections can be severe and common.
  • rash
  • headache
  • thyroid problems
  • fever
  • swelling of your nose and throat
  • nausea
  • urinary tract infection
  • feeling tired
  • trouble sleeping
  • upper respiratory infection
  • herpes viral infection
  • hives
  • itching
  • fungal infection
  • joint pain
  • pain in your arms or legs
  • back pain
  • diarrhea sinus infection
  • mouth pain or sore throat
  • tingling sensation
  • dizziness
  • stomach pain
  • sudden redness in face, neck, or chest
  • vomiting
















    BENIFITS
    Proven to cut relapses in half over 2 years 
    Proven to help most people live relapse-free at 2 years
    THE BOTTOM LINE... I just might have a "normal" life!
    ok... so I know that the risk involved doesn't seem worth it, but there defiantly comes a time in life that after being diagnosed with multiple sclerosis for 7 years and you have a daughter that wants to play with you, but you just can't find the strength or energy to get off the couch. Risks like these aren't scary. What does scare me is living in a wheelchair, unable to care for my child, the inability to have more children & the most terrifying of all, my inability to be self reliant and to do things on my own.







Thursday, February 2, 2017

let the new treatment begin...

Lemtrada day 1, 8:30am

About two months ago I made an appointment with my MS doctor. Through tear filled eyes, I explained the struggle that I experience on a daily bases just to do small and simple tasks, not to mention raising a 3 year old. During this emotional conversation another doctor entered the room to discuss my options. Although they were reluctant to have this new drug as an option for me. They advised me to talk with my family and make sure I wanted to take the risk with this new medication. As I sobbed heavy tears I thought to myself that this just might be my last ditch effort to obtain a "normal" life.
And so the process began. First things first. My doctor ordered me to go on a two month medication cleanse in order to clear my system of the previous medication. This was scary to think about. I have been on some kind of MS treatment since 2010 and worried just how I was going to pull off this 2 month cleanse. I felt the "withdraws" within a week. Needless to say the past 2 month were the definition of a physical struggle. 
During those two months I had to receive a number of tests so that I could be clear to begin the new treatment. Including a skin check to make sure I didn't have any signs of skin cancer, a pap smear, HPV test, MRI and countess blood tests. I appeared to pass all test with the exception of the MRI. My MS lesions are all over the place, such as my brain. neck/spinal cord, thoracic spine and lower back. in the past 7 years of my diagnoses my MRIs had been coming back as unchanged. This time was different... my thoracic spin showed a worsening of MS (more scar tissue/lesions) Even with the proof of my condition worsening insurance was quick to deny me of any treatment. I was sure to file an appeal and my doctor met with the insurance board to make sure they were aware of the worsening of my condition and that this medication just might be my last hope. A short week later I received yet another denial letter. So now my other was option was to file for financial support through the drug company it self, trying to figure out how I was going to fit this $160,00 bill. Fortunately after two weeks or so I received the good news that $158,500 would be covered by the company. One less hurdle to jump over! (Yeah for Sam)
So longer story short here I sit... in a warm and dark room waiting, hoping and praying for the best.