The fiber powder should not do the same thing. That is one of the things that my Dr. has encouraged me to continue...as well as a high fiber diet. He said that he would also rather me use intermittent enemas (sp?) and suppositories.
I had 2 Drs. (Neurologist/spine and Urologist) that said I had CES. No one at that point had mentioned Arachnoiditis. But like you, my EMG was not as bad, as it usuall would be for CES. So, my other 2 Drs. said there is no way it can be this. They talked to the Neurologist to find out why he thought that is what I had, and he said that I had all the symptoms, esspecially the loss of feeling in my legs/back, the bowel issue and finally loss of bladder control. Those symptoms were enough for him to dx. me with it. But still, the other 2 Drs. said no, it could not be this.
When I asked my PM dr. what else it could be, because I am getting worse all the time, and he just said it was part of the failed back syndrome. But then I read about Arach. on these boarRAB and I did a bunch of searches and printed stuff for my Dr. to look at and when I asked him about it, he said that is what he thought I had...but he did not want to scare me. So, now I have 2 Drs. that say CES and 2 that say Arach.
I am so sorry that you were not able to get your bladder taken care of, when you 1st lost control. My Urologist fianlly found what is working so far, to keep me in control. I take a medication to help me go and I do a self cath. 2 times a day. I no longer have to worry about having accidents!
My understanding is the only tests are the ENG and Nerve conduct test. Then the rest goes by your health history and it is not always known a lot about.
And regarding bowels, what other treatment should I being asking doctors about? Ask your GI Dr. if he knows how you can start to re-train your system, to be able to go more oftern than every week (or what ever it is for you.) Ask why the bottles of laxitives, all say not to take for more than a week. Tell him that you were told that by using them on a daily basis, it would make your bowels unable to "go" on its own.
I was told that you can have an MRI and that the web like picture would show up. I also read on line that somethime they look like dots/spots. I don't know if it always shows up, or just as it progresses.
I have no problems with my arms, but I do have problems with both legs, worse on the right side. I always use a cane, but usually use a walker. It often feels like it takes every bit of effort to lift my leg and place it in front of the other. It makes me want to cry.
I too have odd sensations on my buttocks, and several places on the back and side of my legs. Its like I can't feel my actual touch, but its also feels painful, esspecially when I scratch or rub hard. Some areas I can scratch and not feel anything, but I feel an odd sensation in another area, near by.
I have never heard of this as a symptom, but I have the pins/needles in the tops of both feet and the front of both calfs.
It sounRAB like we have a lot in common. I will continue to watch for your posts.
Lorie:angel: