I saw my neurologist yesterday, and the good news is she does not think my brain MRI is typical of MS. Of course, that doesn't rule it out entirely (like lupus, it seems as though none of the tests rule out MS if they're negative, but they can confirm MS if positive).
She did a neurological exam and looked at the pictures of my MRI as well as reading the radiologist's report. (She exclaimed at the idea of bilateral mastoiditis.)
I related my history in the 18 months since I saw her last, as best I remember it.
Conclusion? Probably not multiple sclerosis (good news!) but she doesn't know what I've got either and found it sad that I have not had any significant improvement since I got sick in June 2007.
Since my hematologist has not yet opined on the significance, if any, of my ganglioside antibodies tests being somewhat positive, she wants to wait for my appointment with him in a few weeks before running tests. If he determines that my MGUS is responsible for causing nerve damage, my impression was she won't pursue more tests. If not, she wants to do a spinal tap and several nerve tests to see if that will shed any light on what's going on with me.
Meanwhile, I had just two of my five iron infusions last week. I had to reschedule my third because of car problems (the power steering on my Dodge Grand Caravan sprung a leak in the power steering, and we didn't realize it until it was essentially empty). So I get infusions on Thursday and Friday of this week and the last one next Monday.
Extreme Fatigue - Exhaustion. Fatigue. Lethargy. Weariness. It's so much more than just being tired... And it hasn't been this bad in a very long time... it's so intens...
5 months ago