I was dx'd in May 2005 with RRMS. I may have had it for years before. It started with my hands. They would just curl up and feel numb. I was told I have arthritis. That was 1999.
Fast forward to 2004. My husband and I didn't have kids so I decided to try to join the Army. I could pass all the written tests, but when it came to my ortho physical I bombed. I had no strength in my legs. The doctor said " Looks like you have a neurological problem " Yeah, thanks but no thanks. My recruiter had me try exercises. Every time I tried to walk fast or run my left leg just dragged. I decided to try again in 2005 and I flopped. No more Army dreams for me.
Sometime after that I developed a bad UTI. I ignored it. By the end of the week I was very sick. I met my husband at his work so we could go out to eat. When we got to the restaurant I could barely walk. We had our dinner and we went home. I went straight to bed. While lying there I realized I couldn't move my legs. I was so scared. My husband took my temp. It was 103F.
When my fever broke I could walk again. The next day I went to the doctor. I got antibiotics and no explanation for my legs going numb. I saw my doctor again for a follow up and I flat out told him I wanted to know what was going on with my left leg and why it's not working right. He gave me a referral for an EMG.
I went to get my EMG. The technician had poked and shocked my whole front. By the time he had me roll over I was in tears. He just kept testing and flipping through a book he had. All he could say was " I don't understand this. Something's wrong and I don't know what"
He told me about a neurologist he knew and he had the office set up an appointment. The doctor he sent me to had the personality of a dried fig. He sent me for a brain scan and c spine MRI. A few days later his office called and told me I need to get there soon. My husband left work and we went to the doctor. He matter of fact said " you have MS. There's nothing you could do about it. Don't read about it. Don't exercise"
He sent me home with info about Avonex and a prescription for prednisone. He had me taking so much I cleared out the pharmacy at Publix. I hated taking all those pills but I felt great.
A couple weeks later my husband was seeing the doctor for a check up and we shared the doctor so I sneaked into the appointment. When I told the doctor my dx and the boat load of steroids I was taking he became concerned. He told me to wean myself off and and he'd send me to a different neuro.
My new neuro was very nice, but she insisted on a spinal tap and lots of blood work to confirm MS. All the tests went fine and she agreed with me that Copaxone was the way to go.
So in May 2005 I dutifully took all my injections till 2007 when I became pregnant with my first son. After I had him via c-section I went back on the Copaxone. This time I lost my enthusiasm. I skipped shots here and there. My new neuro left her practice and left all her patients behind. Bummer.
I found another neuro who specialized in MS at a local hospital. I thought I would get super treatment. No. All I got was cancelled and rescheduled appointments. No new tests nothing.
In 2010 I had my second son via another c-section. While I the hospital I developed a pain in my right shoulder. The pain went away, but what stayed was a tingling that felt like it started in my right ear and ended somewhere on my arm. It was getting unbearable. So I called my neuro. I think it was April or May and they couldn't see me till late July.
I went online and found another neuro who specializes in MS. I called his office and they could see me the next day! Wow!
I went in and they treated me like a newly dx'd patient. They were surprised that I didn't have any recent MRI's. It had been 5 years. So I got three MRI's, more blood work and a vision response test.
The tests showed the MS had gotten a little worse but I still felt good. I could walk and see so I think that's good. I went back on Copaxone but I was still not very good about it.
Now it's 2011. I just recently visited my neuro because I wanted to talk about new treatment options. I was tested for the JC virus and I had 3 more MRI's. Hopefully I'll be able to take Tysabri. My neuro's office administers the medicine there.
Currently I have weakness in my right leg. Actually, it's weaker than my left leg which is my problem leg. Geez. I may have bladder issues. I find out when I see my doctor again. They'll have the MRI reports.
When I was first dx'd I went online and printed everything I could get about MS. I read books, I went to meetings and I talked about it all the time. Then I had my boys and life changed. It was no longer about me but about my kids. I put MS on the back burner but it was still brewing in my life but I chose to ignore it.
The other day I found my 3 ring binder with all my research papers. It kind of sparked something. That's why I'm here now. I still want to learn all I can and be my own best advocate. And that's good advice.
Jul 08, 2011
Jun 22, 2012
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