I started back in 2002 when I remember at some point having difficulty holding a pen long enough to write out a bank check. The pen slipped through my hand. My Dr. sent me to a neurologist who sent me for an EMG on my arms. I asked her if I could have a systemic disease like ALS or MS and she said without a doubt "no." The person who did the EMG also said a pinched nerve. I ignored this. Later in Dec 2002, I fell on black ice off the front porch and hit the ground with my tail bone. It hurt but the thing that bothered me the most at the time was my total lack of control. I remember once falling when I got out of the car (tangled in the seat belt) while holding my baby and being able to think and make myself fall on my back. This fall on the ice was without any control and I just flew. On Jan 12, 2003 (a month later) I woke up and my left leg was numb to the knee. I went to another neurolgist and he said he would do tests but I really needed to exercise more and should start walking. I never went back to him either. :0
My leg stayed numb and I ended up with back surgery in March of 2003. My leg stayed numb, and I continued to fall for no apparent reason and was very very tired. I had worked for 15 years in a state hospital for kids and spent 15 years as a teacher for high school students with emotional impairments. During those years I taught part time and a university and finished my Ed Specialist Certification and was working on my Ph.D. So I was tired and I thought I had "burned out" on teaching kids. I got a job as a consultant and the most important thing to me at the time seemed to be working in a smaller building where there were no stairs and a small parking lot. I was not so tired by the time I got to my desk. I don't remember falling that year. The next year I got a new job in a different school system. I began falling quite often and had one friend at work who I would tell - "I fell again." That job required I travel to several school districts and I was really tired.
Forward to Fall of 2006. I had a year in at a new job back in my former district. My baby finger just stopped moving. Prior to this it would jump around out of my control but now I could not move it at all. I went to my regular Dr. and she sent me to a hand surgeon to rule out a broken finger that had healed. He said no break and sent me to a neurologist.
So on Oct 31, 2006 I went to the neuro on my lunch break and after 45 minutes and lots of angry remarks about my first 2 visits to neurologists he said I had ALS, but he wanted a second opinion and refered me to his receptionist to set me up at University of Mich. I was quite dumbfounded. "I asked him if I had a second choice." He said no." I remember asking him - "Do you tell people that a lot? He said, "NO" "Not really, well some people, I am a neurologist." I really did just like him. The funny thing was his receptionist said, "We can't send you to U of M. We don't have any records on you. We don't have any bloodwork." I just kind of looked at her, and said, "It wasn't my idea. He said so." Maybe she was more is shock than I was. Wierd.
To make a longer story a bit shorter, I will cut to the chase. I was "accepted" to U of M. and my neuro there thought my progression was so slow that I had either "Atypical ALS" or MMN. I had never heard of MMN of course, but she started me on IVIG in Jan. 2007 to see if it would help. If it did then the DX would become MMN. I had tested positive on 3 limbs for ALS (she explained they do not test on the forth limb because if you have you show on 3 limbs, the 4th one is assumed to show it too. I also did not have a conduction block. Later they found one partial conduction block. I started with IVIG every 2 weeks.
So now it is 2011. I get IVIG once every 3 weeks. I get pre meds of solymendral (IV prednisone, 2 tylenol, 2 benedryl, and 1 compozine. The first time I had IVIG, I was sick (flu like) for a week. They called in compozine for me - headache and nausea pill- and ordered the rest for my next treatment. No problem since. I hope this was not too long. Thanks for the website. Well done. Peg