[BARBARA f BARNES]

You are right, remission means the absence of active disease but cure means totally eradicated disease. As a ONC certified RN I was always uncomfortable when pts in remission thought they were cured. I am shocked at your physicians reaction. Best wishes for a long remission.

[BARBARA f BARNES]

I too am seronegative.  I went through multiple doctors.  I have episodes of dyspnea with normal o2 saturation, as a chem & ICU nurse it was hard to accept it had nothing to do with pulmonary issues.  Finally diagnosed at Vanderbilt in Nashville, after years of different doctors.  Luckily my primary doc kept pushing me to try more doctors. I live in southern IN so we take the 3 hour trip to Nashville every 2-3 months. I finally am stable on 80 gm of IVIG, Mestinon & Immuran. I am a very determined to stay active & have gradually increased my activity to walking 6 miles a day. It wasn’t easy, but I always told patients if you go to chair you’ll stay there.  Good luck everyone, it is so nice to know I’m not the only seronegative or out there.  Thanks to everyone for sharing.

[BARBARA f BARNES]

I’ve always been active but between COVID isolation & MG , I had gained 30 pounds & lost a lot of endurance.  I too am better in the morning so I’ve very gradually increased my walking.  This winter it was total treadmill.  I do most in the mornings.  I walk until I start getting hot.  I have 2 fans on me & keep water close.  I have gradually increased to 3 miles.  Then the rest is daily walking.  Shopping is a good way to add mileage. Stores are cooler & I use the cart for balance & walk up & down every aisle.  Determination has always been my strong point. Good luck everyone.  I do like the idea of cool showers. I will add extras this summer.