Thank you Robin! :)

Anonymous
February 4, 2010 at 11:46 am

Robin,

Thank you for responding to my post! I really appreciate it.

It sounds like from what you are saying that it takes a long time to recover, even if it is “mild” like in my case. I am working full-time and taking care of 2 kids, 2 and 4, so I am under a lot of stress. My kids are in day care and preschool so that helps. If I don’t work, we will not be able to afford our house, so I push myself every day. The other day, I had burning pain all over my body and was so tired, I barely made it through the day. I went home and slept from like 6 p.m. to 6 a.m. Yesterday a.m, I threw up twice in the a.m., but then seemed to do better, with fatigue hitting me midday. Today, I am feeling better, but have weird tingles up and down my left leg and pain in my arms. I constantly have muscle twitches. I have a very dry mouth today. What drives me nuts, is that my symptoms vary hourly and daily.

When I call the neurologist, she leaves me messages to up my dose of gabapentin. I have not taken it yet because my pain has actually been fairly mild. I don’t feel like she is taking me seriously. I am having my thyroid checked again (a panel) to see if there are some issues there.

I can’t figure out if I might have CIDP though what with my symptoms being ongoing. I don’t have muscle weakness though which seems to be a hallmark of that.

I am going to see a neurologist next week for the autonomic nerve testing. He had told me that if it tests positive, that I could have IVIG. I had been told that IVIG doesn’t always work, etc. though which is discouraging.

Boy, is it tough dealing with an autoimmune disease! Thanks for sharing your story with me. That helps me a lot.

Can I ask what kind of residuals did you have? Do they sound similar to what I experience?

Jessica:)