The day had come for me to meet the Neurologist; my mom came with me of course! He did the same tests with me that my GP did, asked a few questions, talked a little more in detail about my symptoms, how long they last, how often they come and go, etc. I am not going to say whom I saw because it was one of the most negative experiences of my entire life. The Neurologist confirmed that I had MS, he also continued to tell me there was nothing I could do, the medication only affects your body in a negative way. He continued to tell me to live a positive, healthy lifestyle and just hope for the best. I stopped talking, thanked him for his time and my mom and I proceeded to the elevator to the parking garage. “Are you ok?” my mom asked. Knowing this wasn’t her fault but feeling overwhelmed, angry, disappointed, scared (insert negative emotion here) I asked her to please not talk to me right now. This story is the beginning of what led to my tears in the car on the way home. How could my GP tell me not to worry? Why does everyone keep telling me that MS research and medication has come a long way and there are so many things coming down the pipeline, yet, this doctor tells me “sorry about your luck”. I was furious with everyone who was trying to make this seem like no big deal and giving me false hope.
I arrived home, a couple of my girlfriends came over, my mom stayed and I cried and I cried, did I mentioned I cried? It was my pity party and I was going to cry if I wanted too!! I cannot emphasize enough how important a support system is. Don’t push friends and family away because you’re angry, you need them, let them help. It was time to talk to my boyfriend. What would I say? What would he say? What would he think? Will he regret having dated me? Will he regret having me move in? We are young and we don’t have kids yet. Do I break up with him and let him meet someone who isn’t sick? Let him meet someone who’s future is somewhat more predictable than mine? He came home that night, I told him the news, we hugged, I cried (damn I cried a lot that day!) and I told him that I understand completely if he didn’t want to be with me anymore that I wouldn’t hold it against him, he is not responsible to take care of me or stand by me. He looked at me like I had 3 heads, told me to stop being ridiculous and assured me he wasn’t going anywhere… not because of MS anyway, my attitude maybe, but not MS lol.
I had an appointment with my doctor to follow up with him after seeing the Neurologist and I told him how awful the appointment was. My doctor was shocked and apologized for the tone of the meeting. He said ” Ashley, I’m an old guy who has been in this game for years, I know first hand how this disease and its treatments have come a long way over the last 10 years”.
I was now going to see an MS specialist for a last opinion. My doctor wanted me to make sure I was being treated by a team who specializes in this confusing condition. For me, I also wanted to hear from an MS specialist that I had MS. My GP and the Neurologist knew but I was fortunate to be able to see a specialist in a reasonable time frame so I was not going to pass this up.
August 11, 2016- ITS GO TIME… My Mom, Dad and myself hopped in the car and away we went. I didn’t have much to say, I wasn’t overly nervous because I had heard 2 times now that it was MS but I was still waiting to hear confirmation from an MS specialist. I felt like I was on the right track and taking control of my health. This appointment was going to push me in the right direction. After the doctor’s view my MRIs and learn about my symptoms, I will be able to start on the medication they feel is the right one for me. I explained to the two MS specialists how my appointment went with the Neurologist and what he said, they both just shook their heads.
I was prescribed Rebiff (which is an injectable) to be taken 3 times a week and I was to start in September. Because this medication will sometimes have an affect on the liver (in a small percentage of people) I have to have blood work done once a month for 6 months and will then see the specialist for my second set of MRIs and a follow up.
When I left this appointment, I didn’t feel scared or hopeless. I felt in charge and confident I was headed in the right direction.
Ok folks, I will end there, this was a long one! Thanks for sticking around and I hope my initial journey to diagnosis helps you with yours.
….Ash, WAIT!! I kept reading because you told us you would let us know about these other conditions that have similar symptoms which was why it’s so important to make sure I’m properly diagnosed??!! Sorry, sometimes I think it’s all about me!! Let me be clear that this is information I came across through reading various articles. I’m no doctor nor am I saying you don’t have MS. I’m simply educating you on some information that was brought to my attention when I was first diagnosed. In reading more about “symptoms that mimic MS” various conditions were brought to my attention. I’ve included some from the list, not for you to think you’ve been misdiagnosed or that you have a different condition, but the more you know the more questions you can ask. I won’t lie, I thought “this is awesome, maybe it’s one of these!!! Fewf!!” but it wasn’t and I can confidently take my medication knowing I have been accurately diagnosed.
Lupus, Lyme Disease, Migraines, Fibromyalgia, Myasthenis Gravis, Sarcoidosis, Vitamin B12 Deficiency, (to name a few).
Some of these don’t create lesions on the brain or spine, others cause symptoms that you don’t experience with MS and others are confirmed or dismissed just through blood work. So, my advice to you is, get the two MRIs as they are used together to diagnose MS, and see a specialist. Misdiagnosis happens, doctors are human too. When diagnosed, I was approached by people who knew of others that were misdiagnosed with MS which was really good information to learn about before starting medication. They were looking out for my well-being and keeping me informed. I actually spoke to someone who was misdiagnosed and my question was “may I ask how your 2 MRIs were misread by 2 or 3 different doctors?” The individual was diagnosed with the GP, had no MRIs done and didn’t see a neurologist or MS specialist.
Ask questions, ask for tests to rule out other conditions, and keep a journal. Every doctor you see from here on out will ask you when a symptom started, how long it lasted and how often it comes and goes.
Document, document, document!
Hope your days are going well my friend, you are not alone.