July 20, 2010 at 3:33 am

Hi Jessica and Jim.

Thank you both for your encouragement and kind words.

Yes I think it is just a matter of time, patience and further tests. It’s just so frustrating not knowing and wondering how this will/won’t progress. But it helps to hear that others are experiencing the same altho also unfair and sad that this is the case.

I have just had my scan results which just show some disc bulges with no nerve compression.

Good luck to both of you in coping with what you have.

Best Wishes


August 22, 2007 at 11:23 pm

Thank you for the info.

Cheryl, I did not respond well to steroid treatment, so I am sticking with IVIG.
I have not tried pp. Probably see how well the 6 month IVIG works out.

Alison, I found the yellow insert and will be contacting the liason. I think she does not live to far from my brother’s house.

Gene, thanks for the positive spin concerning the neuro. I will also keep in mind the recovery time when exercising.

Pam, I am starting once a month IVIG. Steroids did not work well. My husband worked in Minneapolis for the postal service in their IT department. He was acontractor. I visited several times…only when it is warm.

Liz, Oh I scared my sister in law when fell off the curb too. I am realizing there is the need to call upon patience when dealing with either problem to get a confirmed dx.

Update: Started monthly IVIG treatment yesterday. This will be done for the next six mths. Infusion company is giving me a price break.
Today dressed myself without help.
Legs are wobbly, but made it to the dentist without incidence. He also did not charge me today. I think I may get a cane just for stabilty when the legs get tired.
Took a nice happy nappy afterwards. I will see my dr in a week.
We will just wait and see what happens.

Thank you for your time to respond to my message. It really helped lift my spirits. I have been really down this past week.
Thanks again.


August 3, 2007 at 10:33 pm

Thankyou so much for your reply.You have answered so many of my questions and yes I have been very supportive of both of his conditions in fact I am the one is is constantly going to bat with the docs and pharmacist and phisio to make sure he is getting the best care possible.He seems to be fine one minute and then crying the next i told him that it would pass that he is just tired and reap the benifits of the tears (he will have a good complexion when it is all done from the extra moisture etc.).I really appreciate the effort that all of you has shown me over the nlast five months and i will continue to pray for your health as well as his thanks again .:)


February 7, 2007 at 3:37 am

thanks for your reply, its my first time on the site, take care


July 7, 2006 at 4:37 am

Thankyou all for your kind thoughts.

John left us at early this morning very peacefully and quickly. It was a truely blessed release after all his suffering.

I will continue to quietly monitor this forum as I have found it a really caring community to be part of. Once again, thank you I wish you all strength, courage and positive forward looking thoughts.