My History with MS

Before I get my Ocrelizumab (Ocrevus) infusion in a few weeks, I thought that I would give a little history of my condition.  I realize that not everyone with MS has the same experience or symptoms, but maybe some of the things that I went through will be similar to others who are fighting MS.  From a health standpoint, I've always been pretty healthy.  I was athletic and did a lot of water and snow sports to keep active.  I had a lower back surgery in 2009 to deal with a protruding disc that was causing a ton of discomfort and sciatica.  I had a second surgery in the fall 2013 on the same area, as I was having more back problems.  Around the same time, I notices tingling in my toes and fingers.  Unfortunately, the back surgery did not alleviate any of the tingling in my extremities.  I was sent to my first Neurologist, and he suspected Multiple Sclerosis almost immediately.

He referred me to a specialist in MS after the tests and MRI came back confirming the diagnoses. In 2014, there was a number of different treatments for MS, but no cure.  I made the decision to participate in a clinical trial for the drug Gilenya.  I wasn't too excited about taking any drugs that forced me to take injections daily, and the possibility of taking a pill to slow down or halt the disease.  I was part of the clinical study for a year, and then switched over to my insurance footing the bill for the drug.  I continued to see progression of the disease, so in December of 2015, I talked to my Neurologist about other options.  I had seen some articles praising Ocrelizumab as a breakthrough medication that would be going tor FDA approval.  I wasn't willing to wait that long.  He told me about a potential study that would be available in 2016 using the drug.  I was also told about an alternative called Lemtrada, which worked in many of the same ways as Ocrelizumab, but had higher risks.  I told him that I was willing to wait to see if I could get in the study, versus having my insurance pay for Lemtrada.  Unfortunately, there were delays in getting the drug study for Ocrelizumab going, but we're very close now.

Here are my symptoms as I go into the study:

• Numbness in my toes, with it being far worse on the right side.
• Cannot bend my big toe on the right side without significant effort.  
• Knee pain on left leg, and stiff ligaments.
• Difficulty walking after sitting for a while.  Need to stretch for a few steps.
• Severe difficulty with stairs.  
• Balance is messed up.  Hug the walls when walking inside.
• Numbness and tingling in fingertips.  Dexterity has worsened.
• Cannot lift right leg without significant effort.  Impacts things like driving and getting in and out of a car.
• Cannot bend right foot forward.  Range of motion is limited.
• Walking is getting to be difficult.  Cannot walk extended periods without rest.
• Trouble sleeping
• Spasms in legs at night / Spasticity
• Cramping of legs

The good news is that my vision is still exceptional.  My latest test still showed 20/10 vision without glasses in both eyes.  I am still able to walk, but it is strenuous at times.  I don't really feel back pain, but with less padding between the bones in the spinal cord, I do have soreness at times.  I have been off of Gilenya for a few weeks now to ensure that I start with a clean slate in the study.  I have noticed some degradation in my abilities in the past few weeks, but it also has been incredibly hot outside which can affect people with MS.