Hello there! I am new to all of this. I was diagnosed in May 2013. It was a fluke how I was diagnosed. I started off with a kidney stone, but on my CT Scan, there were inflammatory arthritic changes in my lower back. This prompted a ton of blood tests and a referral to a rheumatologist. I was told these changes were not normal in a healthy 33 year old. I was suspected to have ankylosing spondylitis. After meeting with the rheumatologist, I informed her that I had this strange sensation in my lower back when I tilted my head forward and some numbness and weakness in my right arm , she ordered and MRI of my cervical spine, and my pelvis. The good news was my pelvis MRI was normal, the bad news was my cervical spine MRI showed lesions resembling MS at C3. So off for MRI's of my head and the rest of my spine I went.
My head MRI showed multiple lesions resembling MS, but the rest of my spine was ok, minus a herniated disk in my low back. I was referred to a neurologist at that point, who on my 33rd birthday said well, I can't officially diagnose you with MS without having a spinal tap. However he started me on on high dose IV steroids. On day 3 of the steroids, I had the spinal tap. On day 4 of steroids, I developed the spinal headache, and signed myself into the ER. I was admitted for a spinal headache, and had a blood patch which failed.
Over the weekend in the hospital, I had my first flare up. I started with right sided numbness, and weakness. I had chewing and swallowing difficulty, and had to use a walker to walk. I spent 10 days total in the hospital, and underwent another round of IV steroids. I received a total of 9000mg of solumedrol. I finally was strong enough to go home, but dealt with the side effects of the steroids for about a month after.
I am now into week 6 of rebif therapy, but am still experiencing the same symptoms of the MS as before. And I am having a hard time managing the Rebif side effects. Between being exhausted, and having flu like symptoms on shot days, I do not feel well. I have tried premedicating myself with motrin on shot days, taking the shots before bed, but it does not seem to help. I am usually own for 12-24 hours after my shots. I am trying to be patient, and adjust to the medication, but am getting frustrated because I actually feel worse. I have been off work for 13 weeks now, and know that physically I am unable to do my job. I am hoping and praying for some change, or will have to explore different drug options.
I would love to have input or insight from others who are dealing with this disease, the medications, and how they manage life. I am new to this and am still in a bit of shock. Also I would love to have input from others with children, I have two small kids, and am having a hard time helping them understand what MS is and why mommy does not feel well.