thanks for the feedback

July 28, 2008 at 7:15 pm

I know the therapists want me to get stronger. I just dont feel that walking without my afo’s is the right thing right now. I thinnk i see my gbs doctor and my foot doctor this week. I am going to talk about it. A little anxious my mom(main caregiver) goes to new york for a week. This leaves me at home with my dad. He isnt excactly the caregiving type. Plus we had to put my cat to sleep he had cancer. Boy THis isnt very uplifting email. Sorry. Good news i started in the compeer prgram and have been matched with a very nice lady. We are meeting for lunch tomorrow. Someone who doesn’t know the pre gbs amy She knows only me today. Less expectations this way

Lunch went great drove myself there. Having a problem with my ankle bone sticking out anybody have this problem after a achilles release. It has put a sore spot on my ankle. See the dr next week. Making it difficult to walk.

Thanks for the feedback

June 14, 2008 at 7:18 pm

After reading all of yourt replys to the mold question, I realized we are all very informed. My symptoms are as varied as everyone elses. I have been taking nuerontin at 1600Mg daily for the past eight years and actually believe it is the cause of my CIDP. Especially after reading the side effects. However, it does helpmwitht the burning pain in my hands. I take 10/325 Mg of Vicodin twice daily for the joint and muscle pain as well. But after taking these meds for so long my body just built up a tolerance which puts me in a vicious carrot chasing syndrome. After using 5/500 vicodin I went to 7.5/7500 and now 10/325. I feared problems with my liver because of the tylenol in ths drug and have slowly weaned my self to a lower frequency of usage in both Vicodin and Neurontin. As much as both of these drugs helped, as far as I’m concerned they both kept me fatigued.

I now am Hyotherasic and am being treated for this latest and greatest sympton.

I found it interesting to hear that ones food intake could have an affect on your symptoms in regards to your blood type.

I too have had a very sensitive sense of smell, and still do. I am exstremely sensitive to flowery perfumes to a point that it takes my breath away.

Then, there’s the dry eye thingee. Oh boy. And speaking of eyes. Did anyone go cross-eyed? I sure did, but was able to have a corrective prism in my left lens.

So I laugh, I cry.
And wonder what’s next.
I hear someone call
But can’t turn my neck.
I used to run and jump and play all day.
But now when I walk I list and I sway.
But my humor sustains me and helps me focus
I wish I could be better with the magicians Hocus-Pocus.



thanks for the feedback

April 3, 2007 at 8:37 pm

I will take the information with me rather than sending it first. I would like the new doctor to see her with fresh eyes and mind.


Thanks for the feedback

February 12, 2007 at 6:32 pm

Hi Ali,

Wow — how did you get involved with Rep.Henry Waxman’s bill? It takes a lot of time and dedication to follow through on these issues.

Thanks for the feedback.