Abbyrition...
 

Thanks for the update--the red freckle dots made me think of Lupus right away. I am so glad you were referred to the rheumatologist. Even though having a chronic illness isn't good news, the fact that you have a direction in which to follow with your symptoms is great news.

To speak to your frustration with doctors and awaiting diagnosis...I think all of us here can relate. Especially peripheral neuropathy, since so often it is labeled "idiopathic," meaning 'unknown cause.' For so many of us, the unknown is the worst part of this journey.

Doctors don't deal well with symptoms that don't fit in a diagnosis box. They have 10-15 minutes for an appointment with you, and I have found they really just want to give out prescriptions to get done with your appointment and move on to the next one. Primary care doctors are over-generalized, and specialists are over-specialized. For example, the neurologist I recently left is an MS specialist. I don't fit the MS profile, with all of my crazy neurological symptoms, but pristine brain MRI. Since I don't have MS, he absolutely did not know what to do with me.

That brings us to our reality. That, as patients, we need to research our own symptoms. Keep careful track of all of our labwork and other testing. If we feel our current doctor is not partnering well with us, we need to seek out other ones. We can use social media to find other patients who rate their doctors highly. We may have to travel a bit to find the best doctor fit for us. Our research often leads us to other pathways to complement the "Western" medical models, including diet supplementation (Thanks MrsD!) exercise, diet changes, alternative therapies.

I am a medical professional, as is my husband. I was actually shocked, and more than a little sad that when I began experiencing medical issues I realized that medicine is not a well-oiled machine. It is actually a disjointed and rusty machine! We have to advocate for ourselves, research for ourselves, ask for testing, ask for referrals. Don't get me wrong, there are some very good doctors out there. But they usually take some time and effort to find, and even the good ones may need our help to ask the questions and order the tests.

And after all of this, sometimes we still don't have clear diagnosis. I am in that black hole right now. Those of you that are too, don't give up the fight. Medicine is evolving every day! :grouphug: