Hello...my name is Travis and I reside in Southern Nevada. I have recently been diagnosed with relapse remitting multiple sclerosis (August 2018).
It all started in 2015 when I had vertigo and my doctor suggested I go to a neurologist to make sure it wasn’t anything else. At that time, I had potentially one lesion. I didn’t believe what the doctor was telling me so I ignored it and agreed to follow up later on. Well, I didn’t.
I finally went to the doctor when I was having some weird symptoms and wasn’t sure what was happening. I got another MRI and it showed significant growth of lesions in my brain and neck. At that time, my follow up with a doctor was a month away. I decided not to wait. I went down to Arizona, to the Mayo Clinic, and got an official diagnosis with more blood work. I also had a spine MRI, which showed lesions in my spine as well. I was showing many symptoms such as numbness in my legs and feet, MS hug, and Lhermitte's. This is when my life changed.
I joined many MS groups on Facebook and Matt Embry reached out to me. He suggested I take a look at Mshope.com. I watched all the videos and read everything I could. When I got home I watched Living Proof! That was very eye opening and emotional. It took me a few days of reading about the drugs and talking about it with my wife to make my decision to fully commit to beat this terrible disease without use of the Drug Modifying Therapy (DMT). I have so much to live for having a wife, and two beautiful daughters (one 3 years old and one 4 months old at the time). I did not want to change my quality of life with the potential side effects of the DMT that was offered to me.
I know it had been a short time with being 100% committed to my new diet/exercise regimen with the help and support from my wife, but I was already seeing improvements in my symptoms.... to the point where I’d say 98% were gone. I had seen 4 separate neurologists from the top rated facilities in my area and they all suggested DMT. I was proud to say I didn’t see a need for them. I also incorporated CBD oil into my daily routine. I had started to wonder what my next MRI would show.
Fast forward to 12/9/18, when I had my follow up MRI. I had been excited to see if what I was doing was making any changes in the course of this terrible disease. I had switched to the Cleveland Clinic in Las Vegas, NV by this time. They are one of the leading clinics in the US for brain health. I was feeling very confident there and I expressed my concern to them about the DMTs. The doctor was very pushy about the drugs, saying there is no proof that diet and exercise will slow the progression like I hoped it to. So, prior to the MRI, I made a verbal agreement on the outcome of this MRI that it would be my deciding factor for going on the drugs. I was feeling good for the most part, not showing much of anything in the way of progression. I spent just shy of two hours in the next MRI. About two hours after, I had a phone call that crushed all my thoughts of beating this disease on my own. It was my neurologist calling and sounded very concerned with the outcome of my MRI. She asked if I could come in the next day to review it. She had told me right then that my disease is progressing and we needed to attempt to slow it.
The next day I went in, she reviewed my MRI and compared it to the MRI from four months prior. It showed multiple new/active lesions. She stated I had a very progressive form of MS. I was scared, upset, and crushed that the way of life I had chosen to try to beat MS had not done anything besides help me lose some weight “haha”.
With the active lesions she suggested I do a high dose of steroids to help with the inflammation that causes symptoms. I was having some symptoms at that time. Let me tell you, 1000 mg of solu-medrol is intense. That was 5 days of an IV treatment. During the treatment you get a nasty taste in your mouth and for many days after you cannot sleep and become an ass. I did not enjoy that at all. Shortly after the steroid infusions I was still having symptoms. These put me out of work for 4 weeks. I attempted to return to work due to disability issues, but that did not work out. I went back and within 4 hours of just being there I began to have symptoms much worse this time. I then submitted all my vacation and told my boss I’d be in touch when things got better. I went home to be with my wife and kids, not knowing if I would ever get better.
Tysabri: this is the drug the doctor and myself chose to treat me with. It is considered number 2 on the strength list for treatment. Now, Tysabri isn’t for symptoms, it is just to help slow the progression of my Relapse Remitting MS. I had my first infusion on 12/31/18, one hell of a way to ring in the New Year...to pump yourself full with a drug you have no idea if it will help or not. This drug is given as an IV infusion for 2.5 hours. I wish that was the only downside of it.
Tysabri has a long list of potential side effects and symptoms from it. The one that stands out for me is called PML! Now I don’t exactly know what it is besides that it is a deadly brain disease! The reason the risk of PML is high for me is because I am JCV positive. That becomes a problem while on Tysabri since it’s an immune suppressant drug for my blood brain barrier. It is blocking the white blood cells from entering my brain and spinal cord to slow this disease down. My doctor is monitoring my JCV levels every three months. I have had two infusions and just had my blood work done to be checked. I have my follow up on the 11th of this month, to go over how I am doing and to get the results of that test. I pray that my levels stay low and I can continue on this DMT.
I am currently feeling pretty good mentally which is probably from the antidepressant and muscle relaxers I am taking daily to function. Physically, I’m in pain in my hips and legs almost all the time. I know I can’t currently run but I can walk, ride a bike, and dirt bike. I had a few weeks where I needed a cane to get around because the pain was so bad in my right leg.
The biggest things I am happy about is being able to hold and play with my kids, and still being able to help around the house and hug my beautiful wife. With MS I literally have to take it day by day and may never know what will be affected next. I have come to terms with that for the moment and I have been back at work now going on week 3.
Thank you for taking the time to read my story.