Quote:
Originally Posted by ElaineD
Hi JoannaP79:
I have a Medicare plan that pays for anything and everything. So I get every test possible. Maybe a good thing, maybe not so good.
The thing about CMT, which I don't have, is that it can't be stopped or treated. So, personally, I wouldn't have bothered with the test, but it was ordered and I had it.
When I was tested, some genetic 'anomaly', not related to CMT, showed up, so the Rheumatologist that ordered the CMT test sent me to a geneticist. She said that the 'anomaly' was unknown as to effect, and so I should just ignore it.
When you reach the frontiers of Immune Disorders, as you have, you begin to appreciate how much is unknown. My husband is a research Immunologist and would be the first the tell you that not only do we not know how the system works, but attempts to 'control' the system would probably only lead to further problems.
Here is a link to the CMT Association:
What is CMT? | Charcot-Marie-Tooth Association
Hugs, ElaineD |
Thanks Elaine, that's helpful. It's quite soul destroying to realise how little anyone knows about autoimmunity and control of it. I came to realise this more recently. Hope has pretty much gone as a result. Does your husband know why we know so little about autoimmunity? Is it because of research funding limitations? Something to do with pharmaceutical motives? Knowing how fast technological advances have been made over the past ten years, I cannot believe that we know so little about this. Inflammation and autoimmunity are behind so very many of people's ills.
I read that cmt cannot be managed at all. Many types of it sound absolutely brutal. But nerve damage is brutal isn't it.
I would like to have an idea of the future which is why I just need so badly to know. Is this going to be a wheelchair situation pretty soon? Will my motor functions go. Will I be unable to care for my son and how soon will this happen, what will I do if that happens. Do I need to think about my son and risks that he may have this. I am desperate to know even if it can't be managed because I need to make plans for possible outcomes. I want something I can mentally grip onto and get my head around.
Thank you for the cmt link, it's really useful info.