Originally Posted by Sam

Welcome KellyAnn,
I'm not sure what sort of health plan you have, but have you thought about looking online for neurologists elsewhere? With the symptoms you have, you should not have to wait to find a diagnosis. There are all kinds of problems that don't show up on "regular" tests and need deeper diagnostics to find out what is going on. Unfortunately, if no cause is seen, there are those that want to just label them as psychosomatic, as was done to you.

Looking can be frustrating, enraging and difficult when you already feel poorly. Do you have any support system? Friends or family who would be willing to help you look?

I understand your feelings. It took years to find someone to not only believe but treat my migraines. During that time, they worsened considerably. At emergency clinics, I was put off and given treatments I had previously had and knew they didn't work. One almost cost me my hand when a drug that clearly wasn't working was repeatedly given IV in the ER. As statistically migraines occur more in women then men, and all tests came up negative, no on would believe that the pain was constant and uncontrollable. You can't give up looking because you never know where you will find the answer.

Be very careful trying to compare your symptoms to syndromes or diseases that are written out. There can be several problems that someone's symptoms seem to fall into and it can be a trap. If you don't already, start a journal and record your symptoms day to day, what makes them worse, better or doesn't help. Keep copies of your medical records, (those are yours and you can ask for copies of them). That way, when you do go into a neurologist, you won't have to regurgitate your symptoms by memory, and it may save time, tests and that "shoot, I forgot to tell the Dr........". Somewhere in there may be the key that a Dr. will recognize. It will also help you go back days or weeks later and look for patterns. It also helps cut down the panic mode and look at it from the outside as opposed to being guided by the fear that accompanies neurologic/pain/weakness.

It would be nice if we could go into the Dr. and just tell them what tests we wanted done and why and get them, but we can't. Sometimes you have to be aggressive about what you are experiencing to get a Dr. to listen. They may not like your approach, but as long as you are insistant, not rude, but insistant, you will get further. The worst that can happen is that you are thought of as a "difficult patient", but would that really matter to you if you were able to finally get things done and Dr.s to listen?

Hang in there and keep looking. I'd say look out of country too, but I'm guessing that like most of us, your funds are limited. I know none of that answers the question you really want answered, but take it as support. There are some good people on this forum from different walks of life. Keep us informed.

Sam