Re: Does it really matter what is wrong?
This is really a tough call, one of which a lot of us face. On the one hand, if there's no treatment, why bother putting a name on it if giving it a name isn't going to change anything. I've been dealing with this myself for about 10 years now.
But the other side of the coin is like this -- unless you have a confirmed diagnosis, if/when there are clinical trials or treatments do become available where a person might benefit, you have to have a confirmed diagnosis before you can benefit from any possible treatments.
I am in the midst of my third attempt to get a definitive diagnosis for my neuromuscular issues. Part of MY desire is to get a better handle on the possible progression so I know what to expect in the future. My doctors agree with this, but also sited the "need a diagnosis for any possible treatments in the future" as another reason to go ahead and try to find out.
But I think it's up to the individual and that person's medical team to decide if it's worth the time, money and hassle to pursue a name to place on the illness.