Coping With Charcot-Marie-Tooth Disease

When i was a little girl (about 6) i had alot of problems, keeping balance, pain, and not being able to do sports cause it hurt to bad. I went to a doctor after doctor and was told all kinds of stuff but a answer. When i was 14 i found a doctor who had told me that i had Lupus So i did years of test after test and again being sent to doctor after doctor and then i got pregant with my son at the age of 18 and my doctor had sent me yet to another who told me that i had fibromialsia [fibromyalgia] (spelt wrong sorry) so then he did more test on me and then i had my daughter and things got worse for me so this doctor sent me to a differnt doctor and at that point i was 23.

I tolded to this new doctor and told him what was going on and he set me up for more test. We did a EMG test and i had no reaction on the test and the doctor did not beleive it so we did it again and then at that point he told me that i had CMT and now i am 25. I have really bad pain and i lost my insurance so it has been hard to see the doctor. Taking care of my two kids now 5 and 3 has been really hard for me. If any body out there can give me some advise that would be helpful cause CMT is not that easy to deal with and most people that i know do not understand much pain i am in or how its hard to do everyday stuff.