Originally Posted by Susanne C.

I am not sure it is hope.

Originally Posted by Dr. Smith

Well, I had originally written a couple of paragraphs about the "some people" you mentioned being in one of the first three phases of Kübler-Ross (denial, anger, bargaining) and holding out hope, while you may (without assuming) have reached "acceptance". If you no longer hold out any hope, I would think you must have at one time, and would remember/understand those folks reasons/motivations.

That's what I get for trying to tackle the rhetorical/philosophical angles; I'm danged if I do and danged if I don't.

Doc

Originally Posted by Susanne C.

I am not sure it is hope. I follow this forum because there is hope for many PNers, but there really isn't for CMT. The posts are interesting, the regulars, yourself included, are very well informed and dedicated, and sometimes I can contribute something that may help someone else or just share a "me too" experience. It is a great forum.

Information about CMT from other sources on the web is either repetitive or erroneous- the old belief that it doesn't cause pain keeps popping up from cites that just paste that darn Mayo page- so SFN is really painful, unless it is caused by CMT, then it isn't? And having your muscles twist and wither couldn't possibly cause pain? The percentage of people who end up in a wheelchair is skewed too, unless I know of a disproportionate number of them, perhaps the others are too busy skiing and cycling to write about it. The idea that treatment is around the corner seems strongly rooted in the talisman-like properties of stem cells, which I am not entirely comfortable with ethically. I also think that corner may be the same one Hoover mentioned.

I do what I do- exercise, watch my weight, take fish oil and B-12, castigate myself for my frequent failures to do all of the above, in case it slows things down, but I am not sure that qualifies as hope. I do not like being a burden on the family. I firmly believe in the relationship of pain management to quality of life, though, so maybe that relates to your comments as in "I hope I can get off the sofa today."

I think of myself as a cynical, ruthlessly logical and realistic person. Hope has always hovered beyond my grasp. Now my husband? He is always hopeful. Sometimes it makes me want to kill him, but it does balance things out.