You guys assessed one of my pns panels that I tested positive for N type calcium channel and P/Q calcium channel antibodies . From what I understand that is the very definition of Lambert Eaton my doctors have been unable to find cancer in me in almost two years.
I still sit here unable to work because my doctor says (he is not sure that it is LEMS)……. How can that even be? I have both antibodies…. I dont have a DX so I cant even get disability while they try to figure this out. My fatigue is crushing that I stay in bed more than half the time. My legs and hands are showing signs of getting weak and shaky.
Its really a tragedy that I can faithfully pay into a system for 35 years thinking all of the while that if something like this happen to me the help would be there when I did it.
And its not just disability. I am being treated different by doctors and insurance companies that dont want to perform or pay for tests without the corresponding DX!~!!!
Without a diagnosis I have nothing. there are no neros in my area that are taking on new clients.
As far as I am concerned, anyone that tests positive for these antibodies should be considered as having LEMS until otherwise proven wrong!!
What can I do?