Hi redfox,

I'm sorry you are going through this. That amount of pain must make it really hard to not have a diagnosis. Not knowing is always hard and I'm sure the pain makes it worse. You've found a great place for support though. All the forums here are very helpful and people really care.

Have you seen a neurologist? I don't think a nephrologist is your best bet for diagnosing something like this (though depending on your symptoms he may still have an important role in your overall care). A rhumatologist was a great idea, but if it doesn't seem to be a rheumatic issue, I wouldn't hesitate to get a neurologist involved. They will be able to help you figure out if this pain is an issue with your nerves, an autoimmune issue, some sort of neuropathy, MS, or something else. I'm not a doctor, but your symptoms wouldn't have made me think MS. It's worth ruling out though. A spinal MRI is always a good idea when you have major neurological symptoms and no explanation. If nothing else, it will rule things out. I'd definitely do it if I were you. Also, if you continue without answers, you may want to repeat that brain MRI in 3 to 6 months. Given that your symptoms are all on the right, it is possible that you have brain our spinal involvement that isn't showing up yet on an MRI. Have you had any EMGs?? Those can test nerve conduction between head and muscles, between spine and muscles, and even between muscles and nerves. That is something a neurologist will probably want to test for you.

Try to get a referral to a good neurologist. It will really help you to find one who is patient, up for solving a mystery, and someone who listens to you. If a diagnosis doesn't happen soon, get a referral to a pain specialist who can help manage your symptoms in the interim ....actually, a pain specialist may have ideas about a diagnosis if that is your only or primary symptom.

Best of luck and keep us updated on how things are going for you!

Mandy