I usually say I am struggling. But now I feel beyond that. I am grateful I was able to work the last 2 weeks but called out today and the 1/2 day I work tomorrow. I am concerned as I have never been this weak and having such compromised respiration going into an infusion, which is tomorrow at noon. I have a very rare form of the rare disease that is MG. I am refractory to all treatment and completely intolerant of any immunosuppressants, (study out of Yale this month again confirmed this sequelea as an aggressive/progressive form of MG) It has the ability to progressively damage your central nervous system. I am working with an outrageously wonderful neuro specialist locally and a well known specialist in NYC. They coordinate as needed. So my treatment plan is designed to hopefully slow or stop progression. I receive IVIG every other week. I am sensitive to the side effects from IVIG especially the Aseptic Meningitis Syndrome....pre-meds are 100mg benedryl, IV solumedrol, iv push heavy duty anti-inflammatory (forgot name). Another 100mg of benedryl 2 hrs into infusion. I am on daily dose of Topomax. As I said I am still getting to work and I love my job....clinician in outpatient neurological rehabilitation center admissions coordinator - over 25 yrs working in neurology (this must have been a joke). But I drag myself home, melt into my bed and that is all there is. I am luck if I find the strength to take a shower.....sometimes it is when I wake up in the middle of the night after resting so long. I am just so VERY, VERY tired....so VERY, VERY weak. So VERY, VERY scared. .Wonderful co-workers who care but all have their own lives. Wonderful cousin who has her own issues and a great friend who I do call to help me once in awhile, has her own life and family. After so many years of working to help others put their lives back together after serious trauma or disease....I have no idea what to do for myself. Resources have dwindled and as much as I have been careful about spending...these days it doesn't take much to bankrupt someone if they need in-home care. Thank you all for listening!! Barb.