Uncertain of diagnosis
I'm 43 and I've experienced intermittent double vision, extreme muscle weakness (to the point I'm now in a wheelchair) and sensory changes in my feet and lower legs. I have extreme fatigue and vomit on regular occasions that remain inexplicable. I'm seeing neurology for a possible neuromuscular disorder. However, my bloods are also abnormal. I have pancytopenia, anemia, macrocytosis, and my neutrophils hover around 1 and my haemaglobin is around 105. My results are abnormal, but have stabilised as abnormal. I've had B12 deficiency ruled out. I don't drink alcohol and ab scans show liver and kidneys are normal. Although my GGT is 133 (moderately high). Also had MS and myasthenia gravis ruled out.
My question is, as I've now seen haematologist and he's concerned about my bloods, does anyone have experience of neuromuscular symptoms with MDS or Leukemia? I'm having a bone biopsy on 27 January, so I know I have to be patient, but my mind is going overboard worrying about a blood cancer diagnosis. Any advice and guidance truly welcome. Thanks, Victoria.
I can't speak to the medical side of it Victoria but I and many of us here can certainly speak to the anxiety side of waiting for tests and results. On that I can tell you - you are not alone! Mind going overboard is par for the course and completely normal, although I know that doesn't make it better, really. What I can say is that you are pretty much doing what you are supposed to be doing and feeling what you are supposed to be feeling and there isn't much more you can do right now. Just know you can always come here to chat, vent, ask questions, or just be around others who completely understand. Sometimes, that is enough to help get from one day to the next. Ask if you need anything! Keep on keepin' on, DPM
