responding to Jessica

March 23, 2010 at 3:14 pm


I read your posting and so sorry to hear all that you are going through. I had none of the pain so that you are dealing with. The first time, it was mainly in my arms, like you I couldn’t hold the hair dryer and do my own hair. Then my legs were getting heavier and heavier, like they were lead. I had to pull myself up the stairs. I had a foot drop that when I was walking, it was like my foot was slapping down, not realizing that I couldn’t lift the front part of my toes off the ground. If I was sitting and not reaching up, I felt perfectly fine.

By the time I went to the doctor for the EMG, the only way I can explain was that I felt like I was slowly getting paralized.

I had my first symptoms of muscle pain in my arms for a few days and had bouts of double vision. I had been out of town for 5 days, from a Wed. to Sun. During this time, everything started going and getting worse as the days progressed.

I did get medical attention quickly, and that was a blessing.

The Monday I came back I saw my first neuro, who was an idiot. He doesn’t even do his own testing and just wasted my time. Then that afternoon, I went to another neruo who did the EMG/NCV. She was rushing, because it was late and she wanted to go home. Her attiude changed when she started getting the results. However, while I was on the table having the EMG, she tells me that I have GBS and when i inquired what that was, she responded that I was going to be a parapalegic. She would speak to my neuro. I took the results with me and went home to read about GBS.

When I read the prognosis, the next morning I called my friend, who is a lawyer and asked to write up a living will and power of attorney, so my husband and daughter can speak on my behalf and control the upcoming situation. Upon speaking to her, she reminded me of a neuro that I had worked for 20 years earlier. I also currently worked with someone who was a personal friend of hers. I am happy to say, I was in her office that afternoon. I got there at 2:00 and didn’t leave until 8:00. She did not want to believe the results from the neuro from the evening before, because my symptoms didn’t fit as a typical case. By the time I left her office, she too dx GBS, called the hospital that i would be in the next moring for a spinal tap and to start day 1 of IVIG.

The Spinal tap showed there was protein in the fluid and I was admitted into the hospital for the next 5 days for IVIG treatment. On the second day, I was able to lift my arms over my head. This reaction is also not typical. most people do not respond as quickly. I left the hopital 12/22/09 feeling great, like it never happened. By 1/26/10 i was put backin the hospital bc I had such double vision and my weakness was coming back. After the 5 days again everything was good. 3 weeks later I went in for the day to have 1 dose of IVIG. less than 3 weeks later, I had to go back in b/c I was getting the weakness again. My eyes were perfect. I don’t really fit into any specific category yet. They did blood work to see if the antigen that is usually present in patients with Miller Fisher (forgot the name, IQ1B). well that was negative. She called me last night and wants me to wait 3 weeks before the next treatment and see what happens. she is not convenienced it is CIDP.

She said w/CIDP. you don’t have the problem with the eyes. So my symptoms are poiting to two different varients. At this time, i am waiting another week to see if symptoms come back, or hope that maybe this was just GBS and we caught it early and I am on the raod to recovery. only time will tell at this time.

I hope you get answers that you are looking for. I find this site to be helpful, because it makes you more informed and are etter able to ask proper questions and hopefully get answers and the right treatment for you. My doctor also told me to take Vitamines “B”, “C”. I alternate every other day with these and take a multi vit every day. i also take a baby asprine (something to do with the IVIG).

If you need a spinal tap, it did not hurt me. I did get a headache and the only way to feel better was that I laid down. But don’t forget, I not only had the spinal tap, but I had my first course of IVIG, which is known to give headaches as well. one way to help with headaches and IVIG, is to have the IViG drip slowly. When I got the five days they had it drip for 6 hours each day. When I go for these monthly infusions, they give me a little more in the bag, and she had it drip for 8 hours. I had no adverse reactions to this so far. The slower it drips the better for you.

don’t hesitate to contact me.


I was lucky enought that I had seen these two doctors on the same day