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Feb 20, 2017 · Myasthenia Gravis* in Autoimmune Diseases

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

Jan 21, 2017 · Myasthenia Gravis* in Autoimmune Diseases

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?

Dec 27, 2016 · Myasthenia Gravis* in Autoimmune Diseases

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!

Nov 14, 2016 · Myasthenia Gravis* in Autoimmune Diseases

I am trying to find out if it’s the Mestinon or the newly diagnosed MG: storm of tiny twitches in the thousands of eye muscles, painless; same for my face….very strange feeling. At least people don’t notice that. More upsetting is after using my hands to grip something, say, to pull wheeled luggage, my hands will shake so violently I can’t reach out to grasp a railing, or hold a phone–I might as well be doing a doing a hand flutter-flapping dance. All I can do is stick the possessed appendages in my opposite armpits and and hold them there a few minutes, until they recover enough. Meanwhile, I’m “hands-free” in the hotel lobby, refusing all offers of assistance, just standing in the flow of traffic with my bags, hands in pits, smiling. Is this the drug (240 mg mestinon only, no prednisone) or the disease?

Oct 30, 2016 · Myasthenia Gravis* in Autoimmune Diseases

Thanks, @lynnes. That is helpful, as is the “shout-out” of support from others. I am responding well to mestinon, I think but I’m guessing dosages will be increased in the future. They initially put me on prednisone when they suspected Bell’s palsy but that did nothing so I will be somewhat dubious if we try that in the future…but I don’t have bad side affects so I’ll again consider that good luck! My concern during the “11pm” hour (when I always am at my lowest optimism–or perhaps the most realistic?) is, this is now my 4th and most serious autoimmune condition. I am fortunate, again the others are really not in any way debilitating, nor a health risk–NOW that I am aware of them and manage them: from inconsequential working up: 1.Renauds (where you lose circulation to fingers or toes, caused by cold or stress, but capillaries remain constricted); 2. severe gluten intolerance or celiac-can’t tell which because I’ve lived gluten free for 20 years and cannot survive a wheat diet long enough to produce a valid gluten challenge. And 3.Hashimoto’s (autoimmune hypothyroidism). This appears to have started2-3 months before 4. MG. My concern NOW: WHAT’S next? I had Hepatitis A in the past…and Epstein Barr. Hate to borrow trouble, but darned if I’m not feeling deja vu all over again: 1. Discomfort under right ribs, 2. Zero appetite first half of day for weeks, 3. Whacko ibs (constipated,switches to opposite then back again), nausea. Tired, tired, tired. Well, hard to untangle all this from the confusing introduction to my new “MG body” but….from what I read of autoimmune Hepatitis predisposition, I sound like a perfect checklist. I do not want another autoimmune condition. I want to calm my system down. Thoughts on immune system and reactions to nightshade plants ( tomatoes, eggplants, peppers?) Any other thoughts on calming down my system? I have a happy life, suuportive spouse, lots of good things around me. I am now napping like a 90 year old and proud of it! 😀 etc… gonna get gung ho about loving the sh*t out my new MG life, guys, because this IS the one I’ve got!! (Just prefer not manage any more on my dance card). Advice welcome….positive vibes too…

Oct 28, 2016 · Myasthenia Gravis* in Autoimmune Diseases

Thanks, Rosemary. Yes…I’m not looking for medical advice so much as seeking to connect with others who have experience with MG. I know this is always a personal experience but right now my experience feels quite isolated, as I am from a small sized city, many hours from any large population that could support an MG group. I would like to engage with the community.

Oct 27, 2016 · Myasthenia Gravis* in Autoimmune Diseases

Hi. Pretty certain I have I have MG, in absence of other differential diagnostic conclusions thus far. Only sf emg left. On mestinon for 6 weeks, mostly ptosis, eye control problems, sudden onset daily severe overall fatigue, right forearm and hand stability loss of of contol, with tremors, flapping.

Now I get “storms” of micro twitches throughout my entire eye orbit muscles…todaytoday it began in my upper lip/face area below my nose. No one can see unless they look very closely, but it feels very strange, and it goes on for an hour or longer. Is this MG or mestinon? Ideas? Wondering what might I I expect next…