Nah, I am not going to quote the Bible or anything like that. I just want to talk about my life with MS in the beginning. It seems so different from now.
In the beginning my diagnosis was a long, lonely haul. It took me a good year to get a real diagnosis and it was no surprise when it came. I had long since diagnosed myself after my MRI had come back with lesions on the brain and I had been having some symptoms that fit that criteria. It just took months for another neurologist to believe me and correlate my findings.
My family was not very supportive in the beginning, meaning my parental units. They could have been worse but they could also have been a lot more kind and understanding. I mean, my mom didn't even believe me when I told her the doctor officially diagnosed me with MS. She thought I was making it up. She believed me to be a hypochondriac of sorts throughout my life. As an aside, my mom is a nurse who also turned her face away when I was a very sick and thin bulimic.
In the beginning, I turned to online sources such as MSworld.org. There I found people in my same situation, people who could relate to me and answer my questions. That site was my home away from home for months, for probably a solid year or two of my diagnosis. I spent so much time there that it did feel like a safe place for me to be and to talk about MS. I encourage anyone who wants more information about MS or multiple sclerosis meds to stop by their message boards.
That was my life in the beginning of this mess. I'll write more later about what it's like now.
3 comments:
Oddly enough I had a similar situation. A missed diagnosis about 4 years ago left me suffering from many of the symptoms like chronic fatigue, aches and pains, cramping and stiffness, and a host of others. My family, and friends, thought I was just being lazy.
My mom and dad both gave me a rough go of it. Fast forward to this past January and the official diagnosis and now things are different. Of course, my resource was mainly you and all the other wonderful MS bloggers I have met. I can't thank you enough. I know I'm not alone. That is worth more than all the money in the world.
Not only did others think I was a hypochondriac, so did I. I was so healthy and active as a kid, I thought I just couldn't tolerate any discomfort.
I never even told a doctor about my numbness or joint pain. I also never mentioned my headaches.
I was floored by my diagnoses. It came two weeks after getting violently ill with vertigo. I actually still only half-believed it until the other day when my MRI found new lesions.
It seems I am not a hypochondriac after all...
I too had a similar situation. It took my docs 1 1/2 years to diagnose me. I even had one doctor who happened to be a very good friend, bring in a psychologist to see me. WTF.
I am so sorry to hear that you did not have support from your family. My brothers and their families gave me their sympathies and then when we moved to SC they stopped communicating with us. I am blessed with the most amazing husband and three children who are my rocks. I hope you start to see some improvement soon. You are in my prayers.
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