I hope y’all had a nice Friday and a great week! This week I actually worked more than I have in over a month due to my crazy flare up. Luckily my job has been very understanding with my reduced hours. Reducing my hours has been so much helpful.
Even though it is a little difficult and slightly emotional for me, I want to try to carry on with my journey of being diagnosed with Multiple Sclerosis so many years ago. As I already said, my fabulous eye doctor had worked out my meeting with the best Neurologist (well that is how I feel at least!) where I live, before we even had the official MRI results. I guess he just had that doctor intuition to know what was going on and how to handle it as quickly as possible. It still completely blows my mind that an eye doctor, of all people, has the ability to figure something like MS out, when a lot of general physicians might not be able to do so. As most of you know getting an appointment with a Neurologist seems to take forever, but my eye doctor got me an appointment 2 days after we had the MRI results, which was amazing in itself! I think they must have been friends or golf buddies!
The two days I waited to meet my Neurologists seemed like the longest days of my life! I did so much research on MS during those days and truthfully, it scared the hell out of me. I felt like my entire life was changing before my eyes and there was no stopping it. When you get diagnosed with a chronic illness at any age but being as young as I was, you still have a childlike mind and think life is over and will never be normal again.
Between my research and crying, the days finally went by and it was time to come face to face with the Neurologist, that seemed to hold the cards of my future in his hands. I remember walking into the office and seeing so many people either sitting peacefully waiting or in a wheelchair or there was a cane or walker beside them. This was a scary experience for me because I already thought that someday, what those people were going through would be me and it terrified me to no end.
Finally after a long wait, which was honestly only about 5 minutes the nurse called me back. The nurse was an amazing woman who was comforting and understanding of my emotions and fears. After she did the vitals and vision test, the nurse left the room telling me the doctor would be in shortly. It was not but 5 minutes when the doctor came in and introduced himself as Dr. Kaufman. He informed me that Dr. Atlas told him a little about what I had been going through but asked me if there were any other alarming symptoms I had been dealing with. At that time I told him that I had been battling headaches my entire life but was not sure if he would consider that an alarming symptom. Of course he entered those notes in my chart and then told me he wanted to go over the details of my MRI. He explained the issue I was having with my left eye was known as Optic Neuritis but it can and will go away. He told me that Optic Neuritis is demyelinating inflammation of the optic nerve and was common with MS patients. I did not handle that well and started crying again because he had just classified me as a MS Patient and I was not ready for that yet. He continued with explaining what the MRI results were. He told me that I had several lesions in my brain and in my spine, but we may be able to reduce their size by using steroids. He told me that my MRI results indicated that, yes I did in fact definitely have MS and I needed to start thinking of medication to take to slow the progression. He asked if anyone in my family had MS and I told him no one had MS. He did say it was good that we were able to catch this while I was young because we had a better chance of controlling it and that to date I was his youngest patient, oh what luck I have!
It was not until the end of our conversation he brought up the disease modifying medication again, which I was dreading. He said he would recommend I try Rebif, which is a sub cue injection to be done three times a week. I was not thrilled about having to give myself a shot 3 times a week, but back then there were not oral medications available yet and Rebif was the best drug for Relapsing Remitting Multiple Sclerosis, so I said I would try it. The nurse came back into discuss with me how to do the shots and what the common side effects may be, but they would all pass.
So I left the doctor’s office and headed home with this new medication that I had to give myself 3 times a week. I was so scared and exhausted from all the emotions that I felt before the visit and during the visit, all I wanted to do was get home to the comfort of my bed and try to forget everything!
Trying to come to terms with what I would have to live with was so hard but I promised myself way back then I would get through it the best I could. I actually vowed to myself that no matter what I would never allow my illness to control my life but I would somehow control the illness. I did not know anyone that had MS besides my father’s wife so I did not have many people to talk to about it. I actually did my best to hide it from most people because I felt too much shame that I had an incurable illness that I would have to live with for the rest of my life. At that time there were only a handful of people who knew what I was going through, which were my mother and grandfather who were so supportive and caring! For the few shots I had to do my mother came to my house to help me because I just could not do the shot at first. It is truly amazing what we can all learn to live with, especially when we know there is no other option!
Thank you all for reading my post today. I am slowly trying to go through my experience with being diagnosed with MS years ago and it is not easy. As much as I wanted to forget everything, I still remember this diagnosed like it was yesterday. Over my next few posts I will write more about my experience with the medications because there were a few I was on before Gilenya. Please feel free to leave any comments you may have and I will respond as quickly as I can! I hope y’all have a nice evening and a great weekend!!