Well, here I am writing a blog about my life with Multiple Sclerosis. I don’t know where to begin so I’ll begin at the beginning, the diagnosis. In 2011 I started feeling very fatigued, weak, and experiencing excruciating pain that I thought was bone pain. (It was nerve pain). I could no longer do my job and I had no idea what was wrong. I went to Doctor after Doctor desperately looking for answers. This journey of desperation took me to three Urologists, a Rheumatologist, an Opthamologist, an Endocrinologist, a Gastroenterologist, and a Cardiologist among others. All of these Doctors ordered tests, tests, and more tests, even undergoing abdominal surgery at one point.
Looking back, it makes perfect sense because MS affects nearly every part of the body. During this period they did remove an enlarged lymph node and thankfully it was benign, but I still had no answers. There was one Doctor, a hematologist who kept telling me, you have an autoimmune disease. He was right. Multiple Sclerosis IS an autoimmune disease. He prescribed B12 injections and that helped for a while.
My first Neurology appointment in 2011 included having MRIs of the brain and spine and although there was a lesion on the brain the Neurologist didn’t feel I had MS at that time. I seen another Neurologist after that who did more tests and diagnosed me with lumbar radiculopathy and carpal tunnel syndrome. Somewhere in there was a Neurosurgeon who I seen for my lumbar spine and he said, this isn’t from your spine. This is MS. (I now know there is a strict protocol for Doctors diagnosing Multiple Sclerosis. There has to be a certain amount of lesions in very specific areas of the brain and spinal cord. If there is any doubt a lumbar puncture is performed. I was offered a lumbar puncture however the Neurologist insisted he didn’t think it was MS, but I could do it if I wanted to. Want a lumbar puncture? No thank you and I went on my way. I was so uninformed. (Due to the technology today, lumbar punctures are being used less frequently I’m told).
Nearly a year after starting this journey, I remember my very good friend who went with me to nearly every appointment asking me, “how many doctors are you going to go to”? I remember feeling devastated. I felt like no one believed me when I said I WAS SICK and now she doesn’t either. That was it for me. I stopped going to Doctors. I didn’t see a Doctor from 2012 to 2016.
During the Winter of 2016 my left eye began to twitch nonstop and my face appeared droopy. This went on for THREE WEEKS. I went to the Doctor who sent me to the hospital for a ct scan to rule out a brain tumor. All clear! Bells Palsy was the diagnosis. I found out later on that a ct scan is not used to diagnose Multiple Sclerosis. Imagine that. Eventually it went away and life went on.
During this time in addition to the pain and fatigue, I was beginning to feel stiff. Really stiff.
Comes Winter of 2017 and the same eye begins to twitch. I thought to myself, oh no please not again! Again it didn’t stop. I made an appointment with a local Neurologist and he told me it was benign fasiculations from stress. Now my life may be stressful but this was not stress. I explained my history, and how I was feeling and he insisted it was stress. I left there in tears and immediately called to make an appointment with a different Neurologist from my car. It would be a wait. What could I do? By the time I was able to see this second Neurologist I had lost feeling on my entire left side from my head to my toes which remains today. Many tests later including an MRI of the brain and spine on Christmas Eve, I was diagnosed with RRMS (relapsing remitting multiple sclerosis).
About a year later my diagnosis was changed to Progressive MS with relapses. I wasn’t surprised at all and I believe the progressive nature of my MS made it difficult to diagnose until I DID have a relapse. Sensory symptoms (as in my losing feeling on my left side) seem to be more easily recognized (in my humble opinion) because fatigue, pain, and weakness are very nonspecific.
I was relieved to FINALLY have answers.
MS has changed my life and it has changed ME.
For the better.
Yes, it’s painful and yes I struggle every day but I’m not the same person I was a year and a half ago and for that I’m grateful.
If you’re having a difficult time getting answers and you know something is wrong, please don’t give up. Had I not given up, I may have had answers sooner.
I will never give up again.