Thanks fo sharing

February 15, 2011 at 5:56 am

Harry, Tina, Adnan: Thank you for sharing. Sometimes I feel isolated when it comes to knowledge about my symptoms. Harry, I have problems with declines on the street and it is too dangerous for me with just the cane because I live on a San Francisco type hill which is not too severe but yet a risk. So if I travel alone I leave the house with the walker for maximum safety.
Tina, thank you for sharing. I wear AFO’s on both legs because of severe drop foot. This is the most distressing part of the illness. It gets me down. I lay awake wondering if they will ever come back or if I will have them the rest of my life.
Adnan, thank you also….I take Gabapentin although I have no real pain. I went down to just 800 mg per day from 2400mg and felt no different. My doctor allowed me to raise it to 1800 per day. I am experimenting. I wanted to go down to zero and stop, but while I’m still doing physical therapy, I decided to continue because I do sometimes get pain, but it’s rare. I have no side effects from the medicine to speak of. Some day I will wean off altogether to see what happens.