I’m Not Crazy!
I had been struggling off and on over about 12 or 13 years with some neurological symptoms that were never severe but they were bad enough to be obvious to me and to those close to me. I went through a period of time where I could NOT correctly dial a push-button phone. I would try and try and would keep hitting the wrong numbers – I just couldn’t coordinate my fingers with what my brain wanted me to do. Either that or my fingers were too fast and my brain couldn’t keep up. In 2004 I lost partial feeling over the entire right side of my body and I had a tingling sensation – it was like my body was cut in half – even half my tongue lost partial sensation. It was a bizarre feeling. I went to see my doctor right away and he sent me in for an MRI. The MRI was inconclusive but they did show a lesion in the pons area of my brain that might explain my symptoms and they told me I could potentially have Multiple Sclerosis and referred me on to a Neurologist. The neurologist I visited could not see anything on the MRI – said my brain was “pristine” and that if there was a lesion, it was so small it was barely visible and couldn’t possibly be causing the partial loss of sensation I was experiencing. He did a full neurological work-up and found me to be functioning normally. He told me he couldn’t think of anything in the brain that could cause half my body to lose partial sensation so I must have some sort of virus that would eventually go away. Well, it DID mostly go away – all except for the tingling in the right side of my neck – that has continued to come and go over the years.
But I dismissed other MS-related symptoms for years because I’d already been through the MS scare and had been told I didn’t have it. I continued to have cognitive decline and was oh so tired. I was yawning so much that my family thought I had some sort of sleep disorder although I have never had trouble sleeping. In 2009 I gave birth to my first child and in 2011 I had my second (and final) baby. I fell when I was pregnant with both kids and the last time I fell, I sustained an injury to my left knee that left me with some residual numbness. So, in late 2013 when I felt some numbness and tingling in my left knee that radiated into my lower leg when walking any distance, I chalked it up to nerve damage from my fall 2 years earlier. I saw a new doctor in December of 2013 – she was to be my new family physician. But when I told her I had a few issues I wanted to discuss at my physical (like the numbness in my leg and difficulty with urination and constipation as well as balance issues and fatigue, etc.) she told me that I’d have to schedule a separate appointment for each issue because they needed to charge a copay for each separate health concern. I decided that no one issue was so bad that I needed to schedule separate visits – especially with 2 young kids and very little childcare support – so I left well enough alone.
However, the tingling and numbness spread up into my thigh and down into my foot and then, in February, it spread to my right foot. No ignoring it anymore. Time to see another doctor. I did an online quiz to determine if I had the symptoms of MS and my answers to the questions indicated a strong probability that I did indeed have MS. This time, I went to see my husband’s physician who is old-school and was willing to see me regarding all my symptoms at one visit. He told me that he didn’t think I had MS but that I had enough concerning symptoms and that I was the right age, right gender and lived in the right region to merit further investigation. So, he sent me in for another MRI. Again, the results were inconclusive so he sent me to a Neurologist. She didn’t think I had enough lesions in my brain for it to be MS and since I used to suffer with migraines, some of the lesions she DID see could indicate damage from past migraines. But she couldn’t explain my symptoms either. She did a very thorough examination – blood work and another series of MRI’s that were MS protocol and high contract and included not only my brain but my spinal column and my lumbar area (checking for disc issues). The results of that series of MRI’s were clear – I had MS. I have lesions in my brain, spinal column and lower thoracic area. She had to admit that she now thought I DID have MS and referred me to a Neurologist who is an MS specialist for a second, confirming opinion. Finally, in April of 2014, I was officially diagnosed with Multiple Sclerosis and I was relieved! Not that anyone WANTS to have MS, but I had really begun to think that I was imagining all of these symptoms. It was causing problems in my marriage because my husband didn’t understand how I could be so tired in the evenings that I would shut down and be unable to communicate effectively. Now we have something to blame and I was finally able to begin treatment to hopefully arrest the disease progression. I’m now on my second DMT.
This has been such a long road to travel and it has caused permanent damage to my relationships because it went undiagnosed for so long. But I am not bitter. One positive that has come from going undiagnosed for so long is that I have 2 beautiful children that I know I would not otherwise have if I’d been diagnosed in 2004. And I would not trade them for anything. I FIND the energy for these awesome kids and I do not intend to lie down and let MS keep me from enjoying every second of their growing up. MS has made it possible for me to be a stay-at-home wife and mother – I can’t hold down a job because of my cognitive issues and fatigue. But so far, with the support of my awesome husband (who does most of the laundry, a lot of the cooking and most of the vacuuming and other work around the house in addition to holding a full time job and maintaining our vehicles and doing all our yard work, etc.), I’m able to be a Mom and help raise my 2 incredible kiddos. My husband and kids are pretty good DMTs!