When I was first diagnosed with MS. I was having attacks all the time. I would just get over an attack then boom another one. I was having steroid treatments so often that the nurses knew me by name. It was very hard. On top of what was happening with my body and the MS. The steroids were I felt like "killing me". They are great and I am grateful to be able to receive them but they wipe out my body.
Steroids make me feel as if everything inside my body as died. I feel like my spirit and feelings are gone. Everything tastes like metal to me. I feel as if I was in a major accident. I get hot flashes and I feel like nothing makes me feel better. It takes me 3-4 weeks to feel normal again. Each time I have had steroids I swear I will never don't it again. But I do! They work but I feel I pay the price for them.
I was told by my neurologist that the first 5 years of MS are a prediction of what the next 5 years will be. That terrified me because I was under constant MS attack in the first few years. Things got so bad that my husband and I moved back to Modesto to be around my family for help. I didn't work then either. I had to quit because I was in bad shape due to the MS.
I don't know what happened when we moved but we have been back for 4 years now. I have not had any of the attacks I used to have. I have the day to day struggles like fatigue, migraines, Incontinence, muscle spasms, burning feet and all that crap! I have been blessed or lucky that I haven't gone blind again in both eyes, been paralyzed in my legs or lost the use of my hands. I wonder sometimes if it isn't something environmental. Nothing changed in my life when we moved. Just moved 45 miles. Strangely the water here is very chlorinated tasting. Where we lived before for 3 years was not. They had great tasting tap water. I have lived in Modesto all of my life except for a year in Florida and the 3 years in Lodi. I am not complaining by any means. I would just like to understand why MS attacks everyone differently and at different rates. What has or is going on in some people's lives that their MS comes on rapid and hard? Then others like me seem to go into a remission from major attacks? There has to be something in common with all of us? If MS is something that we may be born with then what triggers it to come out suddenly? Something we all have done or maybe been exposed to has to all be common. That's my thought on it!
I was completely normal then we went to an amusement park. I remember my head being whipped around. After that ride I suddenly felt as if a full blown cold had hit me. I was freezing, achy and coughing. The next day it was as if one side of my temples were in a vice. Everyday for 6 days I was either at the hospital, urgent care or my doctors office. No pain medication would stop the pain in my temples. Then the other side started to also have this horrible pain. A few days later the pain was all gone but I was completely blind in both eyes. It wasn't black for me. It was as if everything had turned white. Like I was in a very thick fog that I couldn't see through. The pain stopped when I lost my eyesight. I had optic neuritis. I was told it was unusual for it to happen in both eyes at once. LOL that's the story of my life! It took me 5 months to see again. Then after a spinal tap and an MRI with contrast I was diagnosed with MS.
So that's how my MS life started. It's been a bumpy road at times but I never gave up! I am a fighter and I refuse to let MS win! Everyday I deal with what symptoms I have and move on. I try to forget I even have it. I have had a heart condition for almost 21 years. Most people have to have s transplant within 5 years and some don't make it. That's how I have dealt with my heart condition. I take my medicines and I forget about! then I just live my life. I roll with the punches and try to find solutions to them. I laugh at myself and my struggles too! Laughter is the best medicine!
Have a wonderful day!
Thanks
Christine
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