farleyts

Several weeks ago, I went to the doctor for severe left sided facial pain, which I thought was bad sinuses or trigeminal neuralgia. My doctor ordered and MRI which came back with multiple white matter lesions suspicious for MS. I've had numbness, tingling, double vision, muscle weakness, aches, twitches, stiffness, overwhelming fatigue, and problems with memory and attention span in addition to the facial pain.

Four years ago I had similar muscle symptoms, although milder and had a pretty thorough neuro work up. They ruled out all kinds of stuff, ALS, polymyopathy, myotonic dystrophy, myasthenia gravis, lupus and I don't know what else. At that time, nobody mentioned MS. I had multiple EMGs, all abnormal, a ton of labwork, MRIs of the lumbar and cervical spine, but did not have a MRI of the brain. At that time, the neuro said we could keep on testing, spend thousands of dollars, and never get any answers, or we could watch and wait. I chose to wait. I did get better for a time, but over the last year have gone downhill pretty much.

I've been referred to a neurologist, who I see in two weeks. The one I saw four years ago has left the area so this is a new guy. What can I expect at this evaluation? Are there more tests he will likely do?

I've been doing some reading on MS and the treatments available. My big question is how to you all afford the CRAB meds? We don't have prescription coverage and it seems like they average $1500.00 a month. Who can afford that?

My biggest concern at this point is the fatigue, which is making it impossible for me to keep up with work, household chores. Lately I work and sleep and that's about it.

Any advice, or hints you have for managing the fatigue would be appreciated.