Thanks for mentioning your edema. My PN was also preceded by pretty bad edema in my feet (probably from immobility after a knee fracture). The PN symptoms started maybe four days later. The swelling lasted only about six weeks. I can't imagine it CAUSED the neuropathy (especially since the PN started in my hands/arms a couple of months later). But the coincidence was strange, and I've been wondering if anybody else experienced it. I even searched the forum for mentions but didn't find any.

FWIW, my docs have told me it's not uncommon to have both.

Doc

Thanks. Do they say or imply that there's any connection--that it's not just coincidental?

They don't know. Chief of Neurology told me, "We just don't know everything." I knew that, but I thought/hoped they might know more than they do.

Doc

Sometimes it is a lot better if they don't pretend to know more than they do. I was devastated when my neurologist fired me because CMT is progressive, there is NO treatment, and she doesn't do pain management, but I have since heard horror stories of multiple failed surgeries, therapies, etc. where the doctors wouldn't admit their limitations.
I have since come to appreciate her honestly and to question why some people with this condition have a whole team of specialists they see and presumably pay each year...

Susanne,
Once again your courage is an inspiration. On some level I know that that the specialist I'm seeing next month (to diagnose my idiopathic PN) may not have any treatments, or any encouraging news, to offer. In the back of my mind is the fear of being (as you put it) "fired" by the neurologists. Thanks for pointing out that this may be the MOST caring approach. And thanks to you and others on this board for showing how to face even a pretty depressing diagnosis and still find strength and joy in life!

I know I've posted this link before; I think it helps explain why some people are "fired" by physicians.
A Letter to Patients With Chronic Disease

While I agree that doctors should be more candid with patients, at the same time I recognize that those doctors don't want those patients to lose hope because that particular doctor cannot help them. Medicine is a (lifetime learning) process, and while some doctors are more comfortable sticking with what's well-known (conservative) others are forging/pioneering new knowledge. It's a sticky wicket.

Yet you're here and on the Web (almost) every day continuing your search for answers/information, and doing everything you can to improve your health.

I think the answer/reason is the same—Hope.

Doc

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.