Symptoms of MG
I was diagnosed after 3 months of seeing Drs any so many tests...I have had MG for 4 months now and i am taking Pyridostigmine and prednisone...I have had all the symptoms from lisping, hard to swallow, drooped eyes and blurred vision and now crooked smile. I am now experiencing sore arms below the shoulders and no advance notice when to urinate and diarrhea for 3 months (which may be another issue of Bowel problems - had C.Difficile and colitis. This disease is so hard because symptoms appear , go away and come back..I'm not lisping anymore or have problems swallowing. some days are just hard but im mostly positve..Donna 71 years old
CommunityMember8584550, Welcome to our club!! I am 10 years younger than you. Staying positive & learning to laugh at ourselves... is a good thing. How long ago did you have C.Difficile? That is hard to deal with all on its own, but with colitis on top. I fight with fructose intolerance (sugar in any form fruits, veggies, milk, whole grains, most artificial "sugars") & an issue with gluten... I have had C.Difficile (4 years ago) & E. coli (about 30 years ago). I have had to resort to... with Dr.s ok.... of taking an anti-diarrhea medication about 1 time a week to once ever 2 weeks. I also have Degenerative disc & joint disease of the spine, stenosis etc. that also causes diarrhea for me. The Mestinon itself can cause diarrhea for many of us. Have you been to see a urologist yet about the urinary issues to make sure something other than MG is not going on?? Is your Dr talking about other long-term treatment for the MG other than prednisone? Mestinon is like an aspirin it just helps symptoms does nothing for the disease itself. Yes, these symptoms can come and go at the drop of a hat. And some days are just hard no matter how positive we try and be we can't always be... But you are not alone!! We are all here for you. Hug & Love to you Donna!! Sally Farrier...Myasthenia-Gravis.com (Team member).Were you or are you being treated for the C.Difficile?? with a follow up test to make sure it is gone... That is very contagious & can be deadly!!! Again, not medical advice but I have had it, not fun! And years before I got it worked with a person that died from it. Mestinon or generic pyridostigmine (the generic is what many of us get.) I have been all over the place with is as there is not a 1 size fits all. Some people it does not help but can make symptoms worse. All is trial & error for treatment for all of us. But I started a 60 mg 3 times a day. Then went to every 2 hours while awake, then 90 mg every 3 hours while awake then to 120 mg while awake. I just started a treatment called IVIG. And have only needed 60 mg 2 times a day the 1st week after treatment. Today I have not needed any of it at all the 2nd week after treatment!! Best wishes!! Sally Farrier...Myasthenia-Gravis.com (team member).
If you don't mind me asking, how long have you had fructose intolerance? Did it start around the same time you got MG? I was wondering because I think I may have fructose intolerance as well. I have trouble eating sugars, fruits, and gluten too! If I do have any foods with fructose, it always triggers my MG symptoms. I've done food allergy testing before, but it wasn't very helpful. So, I was thinking I could possibly have fructose intolerance. Is there any way to find out for sure if you do have fructose intolerance?
Hi
, our community gets it- some days are just challenging. It sounds like you have endured a lot, so I'm glad to hear you are finding ways to maintain a positive attitude. Do you have any go-to's you find particularly helpful for staying positive? Again, we get that there are times when being positive can be unrealistic and difficult. I included an article, written by one of our amazing health advocates, where she writes about some self-care habits and benefits of said habits - https://myasthenia-gravis.com/living/prioritizing-self-care. Self-care and maintaining a positive attitude can go hand in hand, which is why I shared the article. Please know our community cares and we are here to support you in any way possible. Sending many hugs and positive vibes your way. Kindly, Jessica, Team Member
