Do you and your doctor "get" each other?

My husband struggled for four years trying to get help from local doctors who blamed him for not exercising enough. They sent him to physical therapy for 3-4 days per week during his last 3 months of life. He struggled to get stronger when all the while they were weakening him. I deeply regret the trust we put in doctors.

After waiting in an ER for several hours when first diagnosed (due to a droopy eye), and reminding a nurse I was still there, a neurologist saw me for ten minutes. He cautioned me about temperature changes, susceptibility with other infections, and the risks of more serious symptoms. My first PCP told me I could die if I wasn't always close to an ER. The next neurologist I saw prescribed gabapentin for my muscle cramps and weakness. I was advised not to travel to remote places anymore and had to cancel three trips, losing deposits amounting to thousands of dollars. Now my current neurologist is saying I don't have generalized MG, only ocular and in fact I can travel and even be exposed to extreme temperatures. He said many of my symptoms are not MG: incontinence, muscle weakness and cramps, fatigue and balance issues. He put me on prednisone; told me gabapentin made me worse and took me off that. The prednisone did help my double vision and incidentally my incontinence. I also did a trip to Alaska and was exposed to -14 temperatures with no problem. Now I don't know who to believe! He told me to come back in 3 months, but the scheduler couldn't give me an appointment sooner than 6 months.

I am so glad to have the team I have. My PCP immediately got testing going when the droopy eye started and then I went to my eye doctor who then sent me to a neurologist. I was with my husband during his neurology appointment and his doctor told me he specialized in MG so that saved me from having to travel an hour away to see the one my eye doctor recommended, which I never could get an appointment with. Problem solved! As soon as I brought up the side affects of Prednisone, he told me about Vyvgart infusion. I am on my fourth weekly dose and so far so good. Now I'll be off for four weeks and then back on it for four weeks. I'll see my neurologist after the second round. We have to advocate for ourselves. No one knows us like we do. Can't say that enough.

I get excellent care from my Neurologist, P.A. And NPA, all listen and are aware of what I have to say. I have a six month appointment and Dr see the NPA each appointment and alternate with the other two.
I always have questions about the VyVgart infusion process i’m using versus the others available and any new products available.