The Journey of Having This Disease
I realize I am not the average person suffering from this disease. I am male, 58 when diagnosed, and only been in the hospital once in my life. I live in MO, just outside of St. Louis.
I had been having issues with tingling and numbness in my hands and feet since summer of 2015, Vision in my left eye was affected, and fatigue, bowel problems, and numbness/tingling was increasing in size. After seeing my current specialists, a cardiologist, and an endocrinologist (previous heart attack and diabetes issues, causing the heart attack), and they said go see a neurologist. Neurologist setup MRI for determination or symptoms. Had a series of MRIs (brain, cervical, and thoracic) and was told by the neurologist that he suspected RRMS. He wanted to wait until final tests came back from Mayo’s (lumbar puncture tests) to make the determination.
The MRI showed 24 flares, with some black hole activity. I am still learning what all of this means. I had a lot of damage to the insulating layer around the spinal cord. I was admitted to the hospital on Friday afternoon, shortly after the MRI results for steroid therapy. After four days in the hospital some of the feeling in my hands and feet had returned, and my vision was improving. I started some medications and had to wait for approval for Tecfidera and it has kept the disease in check and has given me some hope for normalcy. Thank god I hooked up with a contact that needed someone proficient with Mikrotik (Router software), and when I started with him, I got health insurance. Did I mention that I get emotional very easily and really cry at anything I see on TV or something about my grandkids that makes me really proud of how they act on a daily basis?
Annual MRI recently completed, and no active lesions, and notes from dr. office, many of the active lesions have healed (all of it). Very old MS lesions are present. So apparently slowing down, taking the Tecfidera and enjoying my grandkids has been working.
Feeling of isolation
I have found some support groups for MS, that have helped with the (sometimes) feeling of isolation about this disease. Most people don’t get it or miss the point on talking about it. Still working on dealing with multiple levels of stress and discovering that I am not alone in this journey, and some people do ‘get it’.
Fall 2018 Update. Age 61 and months.
MRI showed no new lesions, and some of the lesions are old (hoping this means healing). I am able to move around on my own most of the time. I use my cane when I do a lot of walking (shopping or out for a stroll). It is for stability, and I try to use it every other step or so to stabilize my walking. I have only fallen a few times, and it has been when I am trying to do something off balanced. My numbness in my left hand is still there, and I am dealing with it. I have grown to the realization that I will always have pain and will deal with the balance issues.
Just keeping moving through it
I had my son give me a tattoo on my arm with the orange MS ribbon and the date of my diagnosis. A permanent reminder of the permanent condition. My wife is having health issues with her lungs, and I am now a primary caregiver of a person with a serious illness, instead of a person with a serious illness. It is now March 2019 and I have signed up for the MS walk in St. Louis to spread the word about this disease. I have learned all of the catchphrases on talking about this condition, and get to use it sometimes when it will work. Most of the time I am surrounded by people that do not understand, and I just keep moving through it.
Do you have a fear of needles and take medication that requires injection?