← Return to Myasthenia Gravis: Share your treatment journey

Discussion

Myasthenia Gravis: Share your treatment journey

Autoimmune Diseases | Last Active: Oct 21, 2022 | Replies (93)

Comment receiving replies
@dschmidt

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.

Jump to this post


Replies to "Hello! My dad has MG and I'm very worried about his health. Can you please add..."

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.

Hi, Dan. I hope this info about my path gives you some additional paths to explore, in addition to the surgical options. As well, if your dad chooses surgery, this might be helpful in conjunction:

Although my symptoms were not as severe, I had eyelid drooping bad enough to impair vision, then vision blurring, double vision, and eyes began to be misaligned (picture Marty Feldman) and utter, debilitating exhaustion by 3 or 4 pm most days, and hand and arm tremors and weakness, particularly on the side the eye was drooping, all within 6 weeks, starting in September 2016. The MG likely began subtly in February 2016, along with two other autoimmune disease and conditions simultaneously. Although it's a "snowflake" disease--everyone will have an individual experience, I do believe the key is to drastically reduce anything that can trigger inflammation for your Dad. In my case, it meant a full dosage of mestinon (120 mg 4x per day, carefully taken with meals to avoid intestinal inflammation/diarrhea) to allevuate the symptoms, and a severely restricted diet to address the source of inflammation. I'll use acronyms here, but all are easily searched on Google: first, the diets that gastroenterologists recommend to completely calm down the digestive system (it also removes almost every type of inflammatory causing get food from a diet): AIP (and strictly gluten free) and low FODMAP. Second, although it costs money to have it done, the food sensitivity test (www.nowleap.com) followed by Nutritionist guided LEAP program of food eliminarion/reintroduction, and careful food and symptom logging. Below is what I'm eating this week. Here's the difference that removing inflammatory triggers from my diet has made: My energy is back 95%-I can have a normal life!!--my eyelid is 80-90% above my pupil 6 days a week except an hour or 2 a day. My hand and arm tremors are 100% gone. When I stopped mesrinon for 5 days (to be "clean" for a single fiver emg test), all symptoms remained gone. And I've gone from diarrhea 4x a week to 1 (I acquired IBS along with the MG.) I am optimistic that once my "inflammation storm" is over, I can slowly return to a more diverse diet...but I will remain on organic and grass fed, hormone free for life, now that I see the impact that a single bowl of processed potato chips can have--triggering a relapse of MG symptoms all over again for 10 days.!!

Presently, I eat very little other than chicken, white fish, bananas, blueberries, greens, squash, some fresh herbs, carrots, hazelnut milk. Organic cocoa powder and a smidge of maple syrup if I must. No grains. A little dairy and beef, zero eggs, no pork, no soy, no gluten, zero nightshade (tomato, potato, peppers) nor onion, garlic, Apple, pear, nor prepared foods. I eat homemade chicken bone broth every day, with high collagen content to heal the gut, lots of mineral content (organic free range only). Lots of ginger. Lots of Essential Fatty Acids--Omega3, Borage, Flaxseed.

Hope this gives you something to think about. It probably seems all overwhelming. It has felt that way to me. It is wonderful to hear that you are searching for answers for your dad...As someone with MG, just having the support of a family loved one is the most important part of this experience, for me. It is worth more than any prescription....stick with it, Dan. You and your family will find the right choices for yourselves.....
Greta G

Hi I have had 2 eye lifts, one 5yrs ago on right eye, worked for about 1yrs then it started to close again, my surgeon was apprehensive about another one but had last Feb, again it closed over after just a few months, personally I would not get it done it only tightened the skin slightly but the problem with MG is lack of muscle control so the surgery just takes excess skin, I hope this helps you a little.

I had a thymectom and it helped manage my Myasthenia Gravis. It's not a cure but it lessened the symptoms.

@rapidgirl1

Thanks for sharing that information. I looked on Mayo Clinic's website and found this information about Myasthenia Gravis (MG) and it's treatment. https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036

It looks as if MG can be caused by a tumor in the Thymus gland and that is the reason for the surgery to remove it.
How was your tumor found?

Teresa