[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 put on hold until I see my GI doctor. This is hugely frustrating because I have other autoimmune conditions that we were hoping to cover with the Rituxan.  I could handle some constipation but the threat of an obstruction is scary.

Julie

[Julie]

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 issues but never diagnosed with anything specific.  My mother has tons of “ISSUES” and significant neuropathy. Lots of symptoms of Sjogens but not diagnosed.

[Julie]

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 thankful I can continue to work as a nurse practitioner but I do miss running around the ER.

Julie

[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 years but attributed it to menopause. Last year my optometrist suggested MG based on my description of my eye problems. By the time I got into the neurologist I was having significant bulbar symptoms and shortness of breath. Thank God she started me on mestinon right away and I had a great response which clinched the diagnosis. Now working on finding the right immunosuppressant.

Julie

[Julie]

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 for my neurologist. I started having double vision 40 years ago. It was random and mild. 2 years ago I was diagnosed with undifferentiated connective tissue disease. I was already on methotrexate when the symptoms of generalized MG started. The neurologist wants to start cellcept but there has been a delay due to me needing to change rheumatologists. My previous rheumy couldn’t figure out how to work with the neurologist. I just got the go ahead to add cellcept on top of the methotrexate. My other significant symptoms of dysautonomia with gastroparesis and bowel dysmobility have been helped a lot by the mestinon. I take 60mg 3-4 times in the daytime and the 160mg long acting at night. I’m working remotely due to the threat of Covid and the difficulty with driving and double vision. I have more energy working remotely. The effort required to get to work was making me much worse. I’m hopeful the cellcept is going to help. The muscle weakness is getting worse.

I would love to try to connect via Zoom or other methods.

It’s nice see that we aren’t alone in this MG world!

Does anyone else have a connective tissue disease with your MG? Or a relative with MG? My aunt has MG and lupus. I’m sure family history played a part in getting my diagnosis so easily. I just wish I could find a rheumatologist as awesome as my neurologist! My fingers are crossed that this most recent one is the last one!

Nice to meet all of you!!

Julie

[Julie]

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

[Julie]

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 a link. Other symptoms are blood pressure dropping, especially when going from sitting to standing, heart rate increases or decreases, gastrointestinal problems, such as gastroparesis, sweating too much or not at all, fatigue, short of breath.  So this could be why we have heat intolerances….

[Julie]

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 both have psoriasis. My daughter has raynauds as well. My mother has Achalasia which is an esophageal dysmotility problem that they have decided is autoimmune. So lots of weird random tidbits of autoimmunity with some formal diagnoses.

I’m looking forward to getting to know everyone better! It’s no fun trying to figure out all these symptoms and treatments without hearing how other’s are doing with the same issues.

Julie

[Julie]

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

[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. She called the Rheumy and she’s good with either treatment. Now she’s talking to someone else about my history of positive TB test in nursing school plus 6 months of treatment 30 years ago.  So I may be trying the Rituxan. It would be great to kill two birds with one stone!

Julie

[Julie]

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