The MS roller coaster…emotional / physical
I was diagnosed in February of 2004, I was 27. I was a professionally employed, college graduate, who was constantly “on-the-go.” I worked out daily and took pretty decent care of myself.
It started in about late 2002, I noticed that the vision in my right eye was becoming blurry. I dismissed this for a time, as I wear contact lenses. I thought that either my contacts were dirty, or that I simply needed a prescription change. Nothing to worry about, I would get to it when I could, as nothing was severely wrong and my “busy life” couldn’t tolerate such an “inconvenience” right?
So life went on for a few months, but I noticed that after a workout, the blurry vision became noticeably worse. It would recover (after my body temperature returned to normal) so again, being the 27 year old man, it really didn’t alarm me that much.
January 2004 came. I had just ended a relationship, changed jobs, and moved. This blurry vision had gotten noticeably worse, so now it was time to go the eye doctor and deal with this.
The eye doctor performed his exam on me, and informed me that he couldn’t find anything wrong / changed with my eyes or with my prescription. He referred me to the ophthalmologist. I went to the ophthalmologist, he performed the exam and couldn’t find anything wrong, so now I was referred to the neuro-ophthalmologist.
Now this is about the time that I became alarmed…this is when the stress and nervousness of “what is going on with me,” starts to kick in. NOBODY can relate to this feeling, or begin to understand it, unless they’ve been there!
The neuro-ophthalmologist examined me and ordered an MRI. I went through the MRI and went back to the neuro-ophthalmologist to review the results. This is the time that I was told, “your mri shows lesions on your right optic nerve. These lesions indicate demyelination. The demyelination is interfering with the communication between your brain and your eye, thus resulting in your blurry vision. This indicates Multiple Sclerosis (MS). You will have to see a neurologist.”
So, now not knowing what to think, scared, and confused, I got a referral to the neurologist. I went to the neurologist; he reviewed the MRI film and ordered a spinal tap (lumbar puncture). Needless to say, I was scared at this point. I went through with the procedure. The procedure in itself wasn’t that bad, but the thing that “freaked” me out was the fact that I knew what they were doing! The concept of inserting a needle into my spinal cord to extract spinal fluid, made me sick to my stomach. I got through it, but it really bothered me and stuck in my head for a while.
Now I wait again for the results to come back. A week later, I go back to the neurologist and this is when I am told, “You have MS.” The doctor wouldn’t look me in the eye when he told me this, and an instant “red flag” went off in my mind at this time! I was prescribed Rebif (3x a week injectable,) and sent on my way. A week later, a nurse came to my apartment to show me how to administer injections to myself. I went through the process. After about a week of giving myself these injections, the side effects kicked in. This was an under the skin injection (subcue) so it was a small gauge needle and didn’t really cause that much discomfort when administering to yourself.
The “flu-like” symptoms showed themselves frequently. Advil became my new best friend, and I soon found myself eating a bottle of Advil about every two weeks to control the side effects. I was determined not to let this define me, so I still continued to drink, smoke, and live in a form of denial about this “diagnosis.” I was going to prove to people and to myself that this “label” was not going to define who I was! This mindset helped me in a lot of ways, but later would hurt me in a lot of ways!
I went back to my neurologist for a follow-up visit, and I asked me about other treatments. I have always been an aggressive person, so if there was something else out there that may be more aggressive, then I wanted to explore it. My neurologist replied by saying “if this treatment is working for you, then why would we change it?” This is when I decided that this doctor was NOT for me, so now it was time to find a new neuro.
A few weeks past, and I found an MS Specialist about an hour from my home. I went to see him and was instantly impressed with his professionalism and aggressive style. He reviewed my MRI film and instantly and confidently told me “you have MS,” and “these are your treatment options…” He took me off of Rebif and switched me to Avonex. Avonex was another injectable therapy, but this one was an IM injection. (intermuscular / much larger needle.) Avonex still had the same side effects (flu, etc,) but the treatment plan was to put me on this until the next treatment, Tysabri, became available.) So, I had to learn how to administer an IM injection to myself. Not too much fun. The side effects of this were about the same as the Rebif, but I dealt with them because I knew that there was going to be a “better,” more aggressive treatment in my future.
So countless #’s of blood tests, MRI’s, visual field tests later, Tysabri was approved by the FDA. This was a monthly infusion therapy that had been previously available but was removed from the market by the manufacturer, Biogen, because it was “possibly” linked to PML (incurable brain disease.) It was strong, aggressive, and was going to allow me NOT to have to administer anymore of the IM injections to myself. Plus, I wouldn’t have the flu symptoms from this, so I was excited for a new / better treatment option!
I began the Tysabri monthly infusions and remained on them for about 5-6 years. Throughout this time, I had MRI’s every 6 months to monitor the disease activity. In 2007, there was a slight change on my MRI, but nothing alarming.
In 2009, I had just secured full custody of my 2 children from a previous marriage, and my MS appeared to be under control. I had met “the love of my life,” got married, and I finally felt that the worst was behind me.
I remained on the monthly infusions, but I stopped working out, exercising, and taking care of myself. My personal/emotional life had become about taking care of everyone else but myself and despite the treatments, it began to show itself and take its toll on me, both physically and mentally!
In 2010, I tested positive for the JC virus. (The JC virus was determined to be a necessary condition for PML. Simply put, if you’re JC+ then you can develop PML, if you’re JC-, then you cannot develop PML.) And since they still couldn’t link PML directly to Tysabri, I became uncomfortable with my treatment status. Despite this correlation, my neuro still advised that I continue the treatments. I did so, once again waiting for the next newest treatment to evolve.
My “marriage” was the most horrible experience of my life! This is where I am a firm believer in emotional health as I can attest to the fact that there is a direct relation between emotional health and physical health! Emotional health manifests itself psylogically!!! Where else does it have to go?
Despite everything that I knew better, I found myself pushing to please this person. Struggling for money at the time, I was mowing lawns on 110 Michigan summer days, cleaning yards, cleaning houses, vacationing and considering relocating to South Carolina? (Heat is the death of someone with MS.) I was continuously belittled because of my inabilities. Despite all of my efforts to be “normal,” I had to come to the realization that I couldn’t live up to this person’s expectations.
After a breakdown of my marriage, a rearrangement of my personal life, and job loss, my MRI in June of 2011 showed new lesion activity. This encompassed with the JC +, had my neurologist now telling me that they needed to perform another spinal tap to “rule out the possibility of PML!”
Imagine the roller coaster my mind was going through at this point?
My now ex-wife popped her head into my life again during this time to “show support.” I went through the procedure and thankfully everything came back ok. After this, she was gone again.
Now I was faced with a treatment decision. I was not going back to tysabri. I made the decision to try Gilenya, but before I could I had to go through cardiac tests, bloodwork, and wait 3+ months for the tysabri to be out of my system. In the meantime, I was seeing my neurologist monthly for an infusion of steroids while I wasn’t on any disease modifying treatment.
By this time, I was down to 157 lbs. The emotional hell that I had been through with this treatment scare and the back-and-forth dance that I was still having with my ex-wife had shown itself.
While I was waiting to start Gylenia, I began working out daily. I started vitamin supplements and weight-gainer supplements. I was working at a new job, making money. I was dating again, and starting to resemble the shell of the person that I was when I was first diagnosed!
The day finally came, and I started Gylenia. Unfortunately the side effects of this were terrible! The cardiac effects were too much to handle, so after about 2 weeks, I had to discontinue it.
I had stopped working out because I couldn’t do it! Great, here I am back where I was. The ex popped her head up again during this time which only complicated things! As the usual, she was gone again after a few weeks.
My neurologist and I decided to part ways after about 6+ years and my close nurse friend referred me to a new neurologist locally.
So that is where I am currently at…copaxone injections daily, while tecfidera goes through their insurance red tape. I should hopefully have tecfidera in my hands within the next few weeks.
I am back to working out daily, maintaining my weight. I am now up to 186 and maintaing this through daily workouts!
The roller coaster ride of my health and personal issues has definitely shown itself with my health. The true only defense against this is exercise and nutrition!
Thanks for taking the time to read my story!