October 6, 2008 at 4:42 am

As Julie points out, each person is different not only in how they react and process drugs, but also other factors like other medicines and severity of disease. If someone is not able to walk or breath on their own, most people would use a stronger immune suppressant drug because you really want to optomize the chance for reversal of the illness. If someone has pins and needles, which are bothersome, but not life threatening or life-altering, one looks maybe for a “safer” drug that might have less “risk” of problems from immune-suppression on the body. In our clinic, the general rule of thumb is that cyclosporin/CSA is “safer” from an infection or lymphoma point of view than imuran/azathioprin and this is than mycophenylate/MMF/CellCept, but the “effectiveness” as an immunosuppressant goes the other way. Since our clinic takes care of children with immune problems as well as cancers, we often tell that families that you should not always look at the listings on the pamplets about side effects of drugs and worry about POSSIBLE rare future problems–you have to deal with the one you have, which is by itself serious (and probably progressive if not treated smartly). One of the doctors has this little saying–that if all of us look at the side effects listed for aspirin or tylenol on the bottle or pamphlet, we might never take it, but we all probably have and appreciated the good things that it did (helped the headache, for example) without experiencing all or any of the “risks” that are possible. It is important to be informed about risks so that you know what to watch out for and it is important to treat any medicine or herbal medicine as serious and not use them more than necessary, but also to not be afraid to use them smartly when needed.
WithHope for a Cure of these diseases.


June 1, 2008 at 12:03 am


This has been one of my most challenging issues! I have CIDP, not GBS – and I have had poor balance and inability to find myself in space for a number of years. I started to do Pilates to assist in my core strength abuot 2 years ago; this has REALLY helped with my balance.

The other thing is using my eyes alot more; not relying on my brain or perception to try and do things that we tend to think of as automatic – e.g. reaching behind for something that you know is there, and missing, or dropping it.

Walking is still interesting, even down city streets; I tend to trip and fall in the most embarrassing places! Uneven ground – e.g. in the country, etc. is quite difficult!

Take care – the exercises that Deanop recommends would be really helpful.