Can PCP Rx Mestinon? Suspected MG
Hello!
I am new here and I’m so alone with this so forgive me if this is long.
I was wondering if anyone has had the experience of a primary care doctor being willing and able to do a trial Mestinon prescription.
I got so close in 2019 until my doctor (affiliated with a hospital group) went to her laptop and it told her we had to try some other drug first beginning with a C that I know my neighbor took for fibro. The reason I wanted to try Mestinon was to give us a clue. Through my research I came upon MG and it seemed to be a fit and my doctor agreed and appeared excited to try Mestinon, until the gods told her no, which defeated the purpose. I left and never went back. I had already been through the ringer with tests and the usual doctor experiences beginning in 2015 with MAJOR problems.
Fast forward to now and I’ve been in a bad (for me) flare all summer which has worsened to where I cannot do anything without having to lay down after and often fall asleep. After 2 hours or so I am feeling ok enough to get up and do it again. Muscle fatigability. Also my left eye is worse and for the first time I have actually felt it at times. The first time I felt it I looked in the mirror and it was worse than ever. I did the ice test - only for about a minute because I can’t stand it and find it painful - and my eyelid improved. In the past I’ve gotten tired chewing and an episode of slurring. When I was on 6th grade a boy teased me because “one eye is bigger” than the other. Not sure if related but around the same age I had to do eye exercises with a string and wooden balls for my eye muscles because my eyes focused before the page. Not sure if that’s related but I just realized these things and so perhaps this started long before I even imagined. There’s a lot more but I’ll leave it at that for now.
I have tested out as what they call sero negative in 2019 but I do show antibodies. Binding <.03, Blocking was 15 and Modulating was <12. Seriously I’d think negative would mean 0, but call me crazy.
I’ve had brain & neck MRI and regular EMG. I asked the neuro after the EMG if it showed my long-time hand/wrist/forearm weakness to be from my neck, and he said “nope - it’s not your neck”. I was simply flabbergasted since all those years I assumed it was nerve damage from a bad neck herniation I had around the time when that began.
Anyway I‘be decided to put myself through help again and chose a doc near me who I don’t believe is connected directly to a hospital and therefore might have more leeway with prescribing until I can get to a new neurologist. I know this is MG and it’s been a long road and I figured it out myself and I also believe I know what caused it.
😀
Finally got a call for an appt with an MG neuro that I found with the search tool but it’s in almost 4 months! She said she’d put me on the wait list. I’m worried because normally I improve greatly by October when cooler temps arrive, but this time after a severe (for me) flare I am not improving like that.
I may try the eye patch since suddenly I’m having forehead exhaustion above the brows some evenings. Ugh. This is not a good year for all this for me.
I say interesting visit because in the am before the visit I noticed my eye was the best I’ve seen in a long time. I was like seriously?? Today!? When I have my appt? Well, when I was in the room with him, the office was a bit warm, and he even opened the window as we were talking. It was a 90 min appt. Toward the last 1/2 hour or so he could really notice my eye worsening. Then while talking - having talked so much for so long - suddenly my jaw became weak and I stopped and showed him where it was and I was distressed and emotional. Then I slurred a little! So since it was warm in there he got to witness a decline. Then when I went to get up at the end, I had trouble and I saw him watching this out of the corner of my eye. Anyway, this was a week ago and I still haven’t heard about the referral which he said he was going to try to get me in asap. When explaining & apologizing that he didn’t feel comfortable Rx’ing the Mestinon, he mentioned cholinergic crisis being his concern (I think he looked it up on his phone) and likely since I mentioned diaphram weakness & discomfort. Then on Sat I awoke at 6:30 am with bad muscle spasms all over my body incl diaphragm! I was terrified! I went out and got some Gatorade which helped. Later that day I got fast food (yuck -hungry my and exhausted) and while ordering I slurred my words and my jaw got very weak. There’s more but you get the picture. I’m getting scared and actually it’s like 3:30 am and I’m up bc I keep getting strange feelings while laying down. Maybe it’s anxiety I keep fearing I won’t be able to breath. Sorry this is so long. I think I’m just needing to “talk”. Normally when the weather cools a little I improve, but now im worse than ever. I have been better than Saturday however and have had good moments. Thank you again I have to work and so I’ll try to get to sleep - luckily I work from home. I’ll check your info later today.
Your primary care doctor should be able to prescribe you mestinon. However, they may be hesitant and refer you to a neurologist or MG specialist instead: https://myasthenia-gravis.com/living/multiple-doctor-experiences, https://myasthenia-gravis.com/living/diagnosis-challenges. In regards to antibodies, any showing at all warrants an MG diagnosis, as these are not present at all in those without MG. Hopefully, you can get a mestinon trial soon. If your doctor does not give you an MG specialist referral, if you reside in the USA, here is a search tool: https://myasthenia.org/Living-With-MG/Find-Medical-Experts/fbclid/IwAR15QEvIG-1-RpvDB-nZ5Y8OkGXiQ91HIQD9laIvq9Meo27jSSTqYkISp3Y. Keep in mind, typically MG specialists book out on average two months ahead.
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It sounds like you had a frustrating experience with your doctor and the medication you wanted to try. It's important to feel heard and supported by your healthcare provider. I'm really sorry to hear that you've been dealing with such a challenging flare-up. I understand how incredibly exhausting and frustrating it is to have to deal with such severe muscle fatigue.
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Have you tried an eye patch for the worsened left eye? This has helped me and numerous others with MG. I experienced weakness in both eyes, but I believe to help strengthen the left eye, you would wear the patch on the right, but to give your left eye a rest, you could alternate sides.
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While EMG tests can help your doctor understand the health of your nerves, muscles, and communication, single-fiber electromyography (SFEMG) may be necessary for some individuals. SFEMG is the most sensitive technique for detecting a neuromuscular transmission defect.Jodi, Team Member
Thank you so much Jodi for the info. I’ll check it out tomorrow. I did see the NP at the doc office. It was an interesting visit to say the least, and he was hesitant to Rx the Mestinon just like you said. When all was said and done he said you definitely have something going on whether it’s MG or not. I had talked about trying to decide to go to a closer neuro I had picked out, or one from the MG lists which is further away. Right away he firmly said I should see the MG specialist and forget the other.
