[maggie]

I agree that how to deal with fatigue is the toughest misconception. Frequently I have to decline evening invitations and bow out of evening obligations because I know I will not have the stamina to remain standing after 7 pm. Inevitably, the asker will say, “Just take a nap and jpin us later,” not understanding that although a nap may allow me to regain consciousness, it does not restore my strength; it takes 8 or 10 hours of sleep to restore energy.

Second is the expectation that I should be able to take on mental tasks (making plans, telephone calls, writing lists and letters) because I can do them sitting down! Others don’t seem able to understand that my fatigue is not only physical. My difficulty stringing words together is not cognitive decline, it’s another dimension of the disease that comes and goes depending upon my restorative ability.

[maggie]

Yup. Just like last year, Pyridostigmine extended releaee 180mg is “out of stock.” There is but one American manufacturer and they declined to tell me when it might be available again. My neurologist told me there is no alternative, no substiture. I already take 4 doses daily of regular 60mg pyridostigmine.

[maggie]

I began with 60mg pyridostigmine 4x daily 10 months ago; no improvement. Added IVIG every other week; no improvement. Added 250mg mycophenolate 2x daily in January, increased strength of IVIG; continued to decline. Increased mycophenolate to 500mg 2x daily and added 180mg pyridostigmine ER 2x daily and I FINALLY stopped worsening. Now I can no longer get the 180mg ER (manufacturing shortage) and I am backsliding. It’s a shame that I finally found a regimen that offered some slice of “normal” and then lost it.