Stephanie
Forum Replies Created
-
I want to thank everyone for being so wonderful, supportive & informative! Today, I had a SFEMG that showed no neuromuscular junction disorder & with no antibodies, it’s safe to say that I don’t have MG after all. With that being said, I’ll be removing myself but will continue to do what I can to help spread awareness! I wish you all the best!!
-
I’m so grateful to you all for sharing your experiences! I was diagnosed 2 years ago & was 1st prescribed with Mestinon & Prednisone. After about 2 months, I did stop the prednisone because my mental status was greatly affected. Thankfully it did clear my double vision.
Recently, I’ve been flaring almost daily, mostly speech trouble & intermittent double vision. Breathing difficulties haven’t happened as often but it’s still enough to concern me as I can’t get in to the neurologist I was referred to until January.
At this very moment, my muscles are twitching in my face, abdomen & arms and my tongue feels huge. I had reduced my Mestinon to 30 MG 3 x a day until this started about 3 weeks ago. Now, I’m thinking I may need to take my full dose of 60 4 times a day again. I’m just hoping it settles down & I’m just winging it until I can get seen. This year, I’ve had a lipoma removed from deep in my abdomen & a melanoma excised from my arm. Maybe these 2 surgeries flared me up. I’m still going though!
-
I have other issues in addition to MG & avoid hot showers because it seems to inflame my muscles. Lately though, I have an ear infection that closed an ear & I’ve started with heat to try & loosen up my sinuses but I switch to cold to cool down before I get out of the shower. I’ve also avoided the long, hot baths I used to enjoy because I found I didn’t breathe as easily afterwards & sometimes it would begin while I was in the water.
-
Hello Amy! I’m seronegative having a tiny bit of blocking antibodies considered normal. On my 3rd or 4th neurologist who is questioning my MG dx. Finally scheduled for SFEMG next month & she’s wanting me to see a neuromuscular doc who specializes in ALS due to changing symptoms & not really needing mestinon anymore. My speech hasn’t slurred in a while but I’m having more weakness in my forearms & hands. I’m also extremely stiff in extremities mainly & lots of painful spasms.
My MG dx was given by my neuro ophthalmologist due to double vision that eventually resolved after a round of prednisone. Not sure how much that had helped as my medical diary I kept didn’t show much improvement while on it.
Sorry for the long post! Will get the results of SFEMG at my followup with neuromuscular neurologist at the end of April. My journey with this round of medical issues began in 2019 & I’m tired. Just want some answers & praying it’s not ALS! Wishing everyone all the best!!!
-
Thank you for the response! Prednisone makes me extremely irritable & I became intolerable even with myself. At the time, I was seeing several doctors for various issues & I believe some of my meds were working against each other. I’ve been searching for a neurologist that can help & have had the other issues take precedence in the meantime. It’s hard to find a good fit especially with the bounds of insurance guidelines.
I had taken less Mestinon because my symptoms subsided & felt the full doses were too strong for a period of time. I’m glad you’re receiving the treatment that works for you! I’m sure it’ll happen for me at some point. I’m a little fearful to be honest but I’ll push through.