My repeat CBC was the same, hemolglobin at a 11, which is a mild anemia. Still have moderated spherocytes and my RDW is even higher at 22 (normal under 14.5). The rest of the blood work returned to normal except the albumin and calcium are still low. Went to the gastro, he thinks I have Crohns too. He ordered upper barium and a bunch of lab work. He wants me on a Celiac diet too besides the Crohns diet. He said I may have a celiac sensitivity.

I go to PT on Wednesday to evaluate for Neurological symptoms related to home safety. Has anyone ever done this so I know what to expect?

All docs mention about seeing a hemotologist, but no one refers me - Anemia and spherocytes usually mean hemolytic anemia. I see the neuro and endocrinologist next week and will try and get a repeat CBC to see if the anemia is improving. I am a month post IVIG, so if it is IVIG related, it should be improving by now. If it is not IVIG related and is autoimmune related like pernicious anemia, I would think it would be the same or worse.

I feel like my symptoms are stable now. I think the IVIG improved my breathing and bulbar symptoms. There is no improvement in my extremities. I feel like I have permanently lost the muscle strength in my arms and legs. Is this possible with MG? Has any one experienced this? Maybe it is just the summer heat and I would have been worse than I am without the IVIG.

I want a thymectomy more than ever. The hassle and post-IVIG symptoms are just not worth the benefits of IVIG. I feel like I have lost 3 years of my life due to MG and I want it back, like now. I am missing my daughter grow up. I want to go on a vacation, I want to go swimming in a pool and not sit in the recliner for the rest of my life.

Sorry, I am feeling very down,
kathie