Julie

I just had my 1st infusion 2 weeks ago. I’ve had severe constipation since. Even with an increase to 3 capfuls of Miralax, Mestinon all day long, more smoothies less food and aggressive bowel massage twice a day. I had xrays today and no sign of an obstruction but huge concern that the 2nd infusion due now is going to make things worse. It’s being…[Read more]

My aunt has MG and lupus. I have MG, psoriatic arthritis and labs said lupus but being called undifferentiated connective tissue disease for now. Both my children have psoriasis. My niece probably has lupus but is still in the gaslit phase with doctors…smh.  my father was told he had psoriasis late in life. He had tons of arthritis, bursitis…[Read more]

I worked as a nurse practitioner and the emergency room but couldn’t keep up anymore and took a clinic job. I have now had to pick up remote work as a nurse practitioner. The erratic double vision and periodic blurry vision has made it very hard to drive. Plus the arm and shoulder weakness has made it hard to drive for any length of time. I’m…[Read more]

I have dysautonomia, a dysfunction of the autonomic nervous system, and temperature control and sweating are part of the autonomic system.  After I was diagnosed with Myasthenia I started looking at the research to see if there was a connection. Older research says absolutely not but newer research is discovering a correlation and definitely sees…[Read more]

Wow, Theresa there is a lot going on in your family! Besides my aunt with Lupus and MG, my niece has celiac disease and gets the classic butterfly rash of lupus but not diagnosed with that yet. One of my sisters has had Raynaud’s for years but struggles with mental health issues and has never sought out treatment or to figure out why. My children…[Read more]

Hi Amy,

I’m looking forward to connecting with others living with these diseases.  And definitely the doctors have been stumped by my symptoms!

Julie

Hi Bernadette,

My Neurologist just mentioned this as a possibility yesterday. We were discussing Cellcept but the rheumatologist is suspecting possible psoriatic arthritis or a spondyloarthropathy which would be treated with a biologic and I’m already on methotrexate!  So the neurologist thought the Rituxan would target more than the Cellcept.…[Read more]

Perfect description of how I wear my glasses when my vision is bad. I have a pair of frameless glasses and they work great for the bad vision days!

Julie

I was diagnosed quickly once I finally sought out a neurologist. My double vision started in high school but it was mild and transient. In college I noticed shoulder weakness and that my eyelids didn’t stay shut when I was sleeping. Nothing that ever led me to see a doctor until last year. I had been getting progressively weaker over the past 5…[Read more]

Hi, I’m seronegative as well. My diagnosis was relatively easy. My optometrist first suggested MG due to my right eye randomly dropping out of alignment. The neurologist immediately trialed me on mestinon due to the eyes but significant bulbar symptoms and shortness of breath. I had a great response to the mestinon which confirmed the diagnosis…[Read more]

I was able to work from home for the past 10 months. It was great and I was feeling like I was managing my work life balance better. I had to return to the office for just the afternoons starting 2 weeks ago. It hasn’t been easy. I’m considering looking for full time work from home. We’ll see how this goes.

Julie