About Me

  • Gender Male
  • Age 38
  • Relationship Married

My Story 0 Appreciate this

I woke up for work two weeks ago and noticed that my left hand was tingling, like it had fallen asleep. I didn't think much of it until lunch time when I noticed that it was still asleep. I eventually get home from work and as I'm getting comfortable, notice that my left foot is asleep. A phone call to my doctor had me heading to the ER for a possible stroke. At the ER, a CT Scan showed some inflammation on my right Parietal Lobe. These findings sent me into the MRI tunnel... 2 hours later I learn that I have an active lesion on my right Parietal Lobe and four other dormant lesions on my right Temporal, Right Occipital, Pons, and somewhere else in the Cerebellum that I cannot recall as I write this. I was transferred to a different hospital with a Neurology department. They performed a lumbar puncture and sent the samples our for testing. It takes about a week to get results. (The results did confirm the presence of the proteins, confirming my diagnosis) While I was in the hospital I was given 500mg of Methylprednisolone via IV twice a day. They kept me on this high steroid treatment for about 5 days. I was released with a Prednisone taper. After being discharged I felt significantly worse. Returning to work was very difficult for me. Most of my left leg and left arm were still tingling; the intercostal and oblique muscles on my left side were solid as a rock making it difficult to breathe; I lost my sense of taste, but I could still smell things just fine; I felt as though there were scoops of muscle missing from different parts of my left side; and the fatigue was overwhelming. On the day I was released from the hospital, I was given a final dose of 1,000mg Methylprednisolone (all at once) and sent on my way. In the car ride home, everything finally sunk in and I took my first step out of denial. I suffered from a panic attack for about 5 to 6 hours after discharge. The next day I attempted to return to work. I made it about 3 hours before I was too fatigued to even walk around. I had my wife pick me up and took a 3 hour nap when I got home. It's now about 2 weeks after the initial signs of the flare up. My sense of taste has returned (thank goodness!) and my left side has mostly returned to normal. While there is no more tingling, it still feels like there is a dullness in my left hand, and I'm still suffering from slight fatigue. The steroids have completely ruined any sleep patterns I may have had before all this started. I have a stack of pamphlets that the Neurologist gave me to review. I will have to choose the maintenance medication when I go back next week. It's a bit daunting at the moment... I would love to avoid a needle, but the side effects on the pills and capsules don't look all that great. I'm not yet sure what I'm going to choose, but I'll continue to research. By the way... This is officially my third auto-immune disease. In 2009 I was diagnosed with Crohn's disease. In 2014 I was diagnosed with IGA Nephropathy (kidney disease). Now I have Multiple Sclerosis. My body hates me! I went to see an Immunologist in hopes of discussing root cause, but he told me that he couldn't help. The three different systems apparently aren't related... I still feel like there has to be a link somewhere so my next step is to seek out a Genealogist. I also want to find out if there are any research physicians that would like to have me as a patient. Multiple auto-immune diseases is apparently very rare.

Interests

Living Well with MS Emotional support, Insurance and money matters, Healthcare, Parenting
Getting Involved Walk MS
Research Research news

My Activity