Hi Gabrielle

October 24, 2008 at 7:00 am

[QUOTE=gab111]Actually my friend has arranged a very accessible trip for us to Niagra falls in two weeks.[/QUOTE]

Bundle up warmly…it could be a wee bit chilly around the falls at this time of year. If you get a chance, take a short drive up the parkway into Niagara-on-the-Lake. It’s a nice area with several wineries, theatre etc. You may find the city of Niagara Falls a bit tacky – it caters to the tourism industry. But the falls themselves are awesome. I’m not sure if the Maid of the Mist is wheelchair accessable, but if so, it is a memorable way to see the falls.

When you mention the cost of IVIG, for sure Rituxan would be less. Sounds like the Cytoxan would be worth a try at lower doses like you say. I certainly hope that one of the alternate medications will provide results for you. I’m sure that if I had as positive an attitude as you, I’d have done 500 km this year instead of 200!!

I have an appointment with my neurologist on Tuesday which I am quite looking forward to, as I don’t know what the next step will be for me. I’ll report back afterwards on the findings.

Enjoy your trip to Niagara Falls.

Hi Gabrielle

July 25, 2008 at 4:22 pm

Hi Gabrielle! Pleasure to meet you. No treatment for the nerve damage since 1992. I have been getting treatment for lupus and B12 but the treatment for Lupus stopped 6 years ago and for 6 years I have insisted the B12 or Lupus was eating my nervous system up.
Just recently had spine surgery too and two weeks after that surgery my immune system went haywire! But I was already suffering.
The new doctor wants a nerve biopsy in hope we can figure out what my problem is. After that biopsy I hope they can treat me.
I feel like I am dying a slow death! So praying that I finally have the answers all along. I am very medically knowledable on some things but there are so many diseases out there and I have been a diagnostic challenge. Thanks for sharing with me!