Hi Amanda, thank you for following up with me. I have almost lost hope of figuring out this disease with there being so little information out there
I was diagnosed with MGUS by accident when it showed up on a lab report for something else. It was about 15 years ago and I have progressed slowly but steadily. My M spike is .9 at this point. About 6 years later I started exhibiting symptoms of cold allergy, according to my internist. Mild at first and then obvious signs of purpura on my ankles, red marks, and extreme fatigue would accompany these cold exposures. I developed an ulcer on my ankle which took months to heal with great help from a wound center. That was 3 years ago. Since then I have had two more and the healing is very slow. Prednisone is the treatment and I started at 60mg 3 years ago. I managed to taper to 5mg before developing the 2nd and 3rd ulcer and am now tapered to 9mg. We are taking it very slowly--1 mg a month and so far I have been good with it. Needless to say, I am absolutely paranoid about the temperature and wind. It's a life changer. That's my story and I just wonder if anyone has had experiences with this disease.