3 Tips You Wish You Had When You Were First Diagnosed With Myasthenia Gravis?
Think back to when you were first diagnosed with Myasthenia gravis. What are 3 tips you wish you could go back in time and have given yourself?
Mine would be:
1: symptoms will fluctuate
2: personally double check that all meds a doctor recommend or prescribes, or that I take OTC, are not contradicted with MG (http://nebula.wsimg.com/903ebe2c701eb4e72e3211dc9fb9064e?AccessKeyId=7F50FBE19A111D19DDAC&disposition=0&alloworigin=1)
3: do not start on a higher treatment dose than needed. It is easier to start small and increase the dose as it takes time to taper off the medication. Your body can become reliant on a high dose that can cause long-term side effects. IVIG and PLEX, https://myasthenia-gravis.com/crisis-treatment, are options in addition to a small dose of prednisone are designed to control symptoms while immunosuppressants take effect
- Jodi, Team Member
My opthamologist diagnosed my MG, did a cat scan on my thymus gland found nothing, but discovered a gist tumor on the tail of my pancreas. So had to get treatment for both. He said the only thing he could prescribe was pyridostigmine, which did no good at all except screw up my ability to Pee, had to wear pads as I had no control over my bladder, still trying to get that under control although been off it for 6 months. The doc said it was a side effect.
I think that it is top of the list important for you to be able to talk with your Dr. If something happens. I was giving mestanon and told to take it every 6 hours. After 3 hours I couldn't get water down. We tried to get through to the doctor but the office was terrible. The girl on the phone would say that the doctor doesn't think that as long as things are any worse just keep doing what we are doing. What part of can't swallow don't you understand? She even said maybe I should stop taking it. This is from a office person. I am so glad to have those early days done and all of you as a support group. Thank you @
I was diagnosed with MG after a long period of tests, even including a speech therapist because I was slurring my words. My primary care doctor sent me to a neurologist after my daughter made a presumptive diagnosis after online research. The neurologist told me that a simple blood test would tell whether I have MG, and the blood test came back positive. However, neither my doctor nor the neurologist ever told me anything about the disease - what to expect, how to cope, etc. It's a good thing I have access to the internet, as that has been my education! And I am still learning. It is extremely helpful to read what others are experiencing and what they are doing to cope with the disease. I am fortunate that I was 'up in years' before I started having swallowing and speech issues, and I am fortunate that my symptoms are controlled fairly well with pyridostigmine. However, I'm sure it would have been helpful when I was first diagnosed if my primary care doctor or neurologist had done more than just say "You have MG."
what do you mean by pyridostigmine is not a treatment thats what I was given to take as needed for my dropped eye 
My understanding (from my neurology PA) is pyridostigmine only reduces the SYMPTOMS of MG, but prednisone actually attacks the disease. If the pyridostigmine works for you, that is a plus!
Never heard of it . Until my eye Dr told me what I had. In 1977 when I was diagnosed with it I had no one to talk to but my doctor . That was so long ago that I can even remember he's name but I've been in remission until this year after I had my thymus removed
you have the same story as me! I was diagnosed in 1974 after a very nightmare year. (More on that later) I went into remission after thymectomy in Feb. 1977. All was pretty good until 2007 when the vision went back to crossed eye and drooping eyes and all over medium weakness that has been increasing slowly each year. Now there are days I need to go to bed due to my heavy head! I have been through over 25 Drs. And when I tell someone about my eye issues I cringe when I hear well go to get new glasses.like I have not tried many times. And how about this ...you were well enough yesterday to go hang with your friends and now today you can't.... Fill in blank as you like. But think about this we can't get all the laugh lines right? Have any of you had a relative with lupus? I do and I have been told that is common. When others ask what it feels like I say get into a YMCA pool and run to the other end of the pool with your arms over your head. And remember to smile. And go whip up a meal mom everyone is ready to eat. It could be worse though at least we're all safe ,have a home and food right so thank you my Lord for that. Bless you all. Hi there! It’s been a little over a year since we last heard from you, and I wanted to check in on you. I know you've had some ups and downs with your health, so I'm sending lots of positive thoughts your way. May this year bring you renewed strength, joy, and good health. We look forward to hearing from you!
Jodi, Team Member
