I am newly diagnosed and I am just wondering how often other people see their neurologist. I have just started on the meds and I see him about every two weeks. What kind of experience do other people have?

Hi Rezmommy, welcome on board!
At the beginning (17 months ago) and apart from the hospitalization periods, I saw my neurologist every month, then every two months and now the next apointment is in three months…
Of course she (she is an EMG specialist and works in a hospital) said she would always be available on the phone, and that the hospital could take me on emergency, should it be necessary.
I should also say that I' m very fortunate (…) to have a neurologist nephew in Belgium (I'm belgian but living in France) who has a some experience with MG.
Take care and be patient,
Maurice.

Hi rezmommy

when I was first diagnosed, back in December 2002, I was seeing my neuro every month. This went to every 2 then 4 months.

Iam now seeing him about every 3 months, as I'm proving to be a bit frustrating, ie not responding how he would like me to. I am however doing much better than I was back in 2002.

take care
redtail

Gosh! I can't believe how frequently you have all seen your neurologists! When I was first diagnosed in Canada I met with my neuro and didn't see him again at all - no follow up or anything. He told me to contact him if my condition changed but it didn't for a little while. When I first moved to Scotland I met with my GP but didn't request a Neurologist until my sysmptoms worsened. Then I had to wait a long while (about 6 months as my case wasn't "serious"). Then when my symptoms weren't improved by changing my meds I was in more frequently - about every 3 months. I live about an hour and a half drive from my previous neurologist and truthfully I never really connected with her. There is a new neurologist in a closer hospital though (only a 45 min drive now) and I have been refered to him. I meet him Tusday so I'm looking forward to that. I have often found myself flounder on-line looking for answers to questions because I feel like I have had no-one to ask and I don't want to put anyone out. Hopefully this new neruologist will show some interest in me and things will work out. Thankfully my MG seems pretty stable right now. I'm still on 40 mg of pred every second day and I'm unwilling to reduce further because I have felt a bit weaker at 40 than 45 and I don't want to end up where I was last Christmas - unable to walk and depressed!
Take care everyone!
~Kathy

Welcome to a great place for MG support. I was diagnosed about 22 months ago. I have been seeing my neurologist every 3 months-but more often if needed. Good Luck to you.

Nancy Lee

I see my neuro every 2 weeks- 1 month. I have gone as long as a month and a half, but after that had to be put in the hospital, so I love going in!!!

Erin

I started with every 2 weeks. think I graduated to 1month after 6months. Then every 2 months. now am every 3 months. So it takes time. This is over a period of now like 5 years give or take?? It is best to be close to the docs at first. You have a lot going on medically and medicinally, it is far better to be close to the doc than not.
PERSONAL EXAMPLE: Was going to old doc every 3 months I think, well in the interim, my blood sugars were steadily rising. (office had results not me) then one day I couldn't wake up. I called was told to increase pred that day. Did that. Well "slept" the entire weekend and into the monday. finally woke up enough to call, go to have labs drawn if I felt it necessary. DH came home took me for the labs, the sheriff was looking for us before we could get back home again, blood sugar was over 700. So back to the hospital and into intensive care for a week.
Being in the chair right in front of the doc is always better. Things can be reviewed with you. This could have been avoided with proper and prompt treatments for the steadily increasing blood sugars.
So stay close to the docs.