Myasthenia Gravis: Share your treatment journey

Hi @nelisabeth,
Wow! You have led an active life; thank you for sharing your history. Even though you are going through so much, @nelisabeth, I love the positive vibe in your post!

I'd like to introduce you to a few members who have dealt with Myasthenia Gravis: please meet @saur1994, @socalgal, @gretagean, @harmony4life, @iggeez1416, @mom2mba, @rickg, @dogmamat. I am confident that they will join the conversation to help you.

Some of our past members, @chazmen5, @doggyjon, @fireball1, @artisticgypsy, @negcarlson, have discussed PPS, and I hope they will return to offer some more information about Post Polio Syndrome.

As for finding a neurologist in Winston, Salem, I'd like to tag @maryjo2sell, @rosesareredmylove2016, @worriedson, @msaliceinpain, @dutchgirl1, and see if they have any recommendations for you.

@nelisabeth, although it's great to have a word-of-mouth recommendation, have you tried looking for a neurologist on the internet, as @katemn suggested?

Hi, Colorado Abbey. Well, I had the SF EMG. It was negative/normal as well. The neurologist recommended I double my mestinon dose to 480 mg per day (120mg 4x day) to see if that provides a significant improvement, as a last ditch diagnostic test. The change is pretty dramatic for my energy levels. Back to normal, other than sleeping like the dead. I no longer crash at 3p, and my eyelid does not seem to crash in the early evening either. My vision doesn't crash with fatigue either. I can't say there's a dramatic visual improvement in the ptosis position of the eyelid, though. It was never severe, so the subtle improvement is only noticeable to me. I will have to see what the neurologist thinks in 2 months, whether this is enough of a marked improvement to call it MG or whether he wants to keep searching for a reason. Meanwhile, the initial dose of mestinon, which I unwittingly took on an empty stomach for 2 weeks, triggered full-on IBS, so I now must be extremely careful to take with a full meal (4 times a day!) and I am only an extremely limited diet (AIP low-FODMAP). Basically, if it sounds tasty, I can't eat it. It is much better than the IBS symptoms, however, The diet change does stop the IBS symptoms cold. That's it for now. It seems to be leveled off at the moment, and if I could just drag myself out of bed in the morning on time, I can even tolerate exercise again! Heaven!

,,,thank thee soooooooooooo much for your response, "kp" ... think have finally figgered out a wee bit bout using this site! ????? MEBBE!
have to admit since i wrote .... mucho fatigue! still hootin with virus caught befo Cmas. aaaaaaargh! However .... have a wonderful N.P ... my primary .... we have a plan. She feels we go on n get bwerk dun as planned with additonal tests added (She has one patient .. MUCH MUCH younger than I who has MG and multiple other things with which she struggles .... so young.) So Jenny is more familiar than most docs with this. After the bwerk ..... and in the meantime ..... she is scoping out Dr. i mentioned in Durham at UNC ... acutally is head of Neurology there. And at this time that is about as pro active as i can be. She feels and i do concur that the PPS may present a roadblock to full diagnosis. Fatigue is a part of PPS also. Right now ... tis so at play ..... hard to do more than jes this short paragraph! AND ... we are both revisiting a year ago when was hospitalized with dble pnu moan y. MASSIVE STEROIDS put in play even after five days in hosp ..... i decide i jes didna wanna die that way so after a week ... QUIT EM ALL! HO! took months to recover ........ only AFTER hosp and five weeks later did the culture from Pul Doc come back wtih positive fer MAC-K. am wondering if that could be at play now .... so hard when a virus that mimics something else is invading yer part uv th werld if tis that er "dem bugs"! n so we muddle along.
To EVERYBODY .... if you cannot find some HUMOR in yer sityashun .... find some one who can .... or stay connected to someone who IS funny.
AND ..... Lafftah helps clear our dem lungs! mah wee dawg Rosy an i have a sing fest evry single day ... i howl n she howls an u know whut? we kin akshully Harmonize! B u t FULLL eee! later snoopy!

Hi, K. Yes, I think its the generic Mestinon. I had a dramtic improvement when my dosage was increased from 180mg to 480mg/day. Fatigue nearly completely gone eyelid virtually normal, eye control 85 to 90% normal. --hand tremors completely gone!! This lasted 6-7 weeks. Then I "busted" my AIP low FODMAPdiet and had a big bowl of potato chips. It may have been the oils or the potatoes or contaminants, but 4 hours later, my lid dropped dramatically. Its been a week and I'm still fighting to gain back the ground I lost. The tremors are nearly gone again, but the fatigue that returned is stubborn. Is this coincidence or an immune trigger? By timing coincidence, I just got blood tests back for food allergies: low responses to most things, nothing for potatoes. Only wheat is a strong allergy (I've been GF for decades). Heard anything like a strong food reaction tied to MG flare up?

Hi @gretagean,

From my internet research, what you eat can greatly impact an autoimmune condition like myasthenia gravis, and avoiding certain foods can avoid irritating an already malfunctioning immune system. Although I didn't find any specific trigger, I wonder if it could be the amount of sodium in those potato chips that caused a reaction?

I also came across this great patient story from Mayo Clinic, about a body builder and how he regained energy after surgery for Myasthenia Gravis; you can read it here: http://mayocl.in/2kbPJjM
According to information from Mayo Clinic, low levels of potassium can lead to fatigue, (http://mayocl.in/2eV6JbW); has the doctor checked your potassium levels?

Hello! My dad has MG and I'm very worried about his health. Can you please add him @dschmidt to your MG forum for information and more. Much appreciated as I will show him how to review on his computer so as to engage in conversation.

Hello, my father has MG.. I'm concerned and this looks like an informational forum where he can learn more. Could you please add or recommendation members he can follow. Much appreciated...he is @dschmidt

Did you ever find another solution to help with remission? thank you

Hello, has anyone with MG had their eyelid skin cut & lifted in order to see better and help with the double vision? Or can anyone provide input on patching the eyes to help? Also any recommendations on helping with light glare as it is very frustrating? Thank you, Dan.

@dschmidt Hi Dan: Thanks for joining us at Mayo Connect. I'm sure the other members of our MG group would like to get to know you better. Please feel free to share your story of MG. Including information on when you were diagnosed and what types of treatment you have had. While I have not had a diagnosis of MG, Mayo Connect does have members with this diagnosis and who have also had vision problems, including @rickg. I'm sure that you will be hearing from someone in the near future. As I mentioned, I don't have MG, but I do have a Parkinson's diagnosis and I have heard people in a PD support group mention that corrective lenses with prisms have helped them with their double vision problems. I'm not sure how well that would work for an MG patient, but it might be worth discussing with your eye doctor.

In the meantime, welcome to Mayo Connect . Here is a Mayo website that may provide some helpful information for you: http://mayocl.in/2e1zql7
I wish you well as you seek a treatment for your double vision. Teresa