Myasthenia Gravis*

Posted by socalgal @socalgal, May 10, 2016

Hi everyone, Let me begin by telling you some of my story. In 2008 I was losing my eyesight and I couldn’t make my eyelids open. I had to manually lift them to do anything. I went to a neurologist, after seeing him for a few months, he told my that he believed l had Myesthenia Gravis. So he talked with a collegue and sent me to Salt Lake City to the Univ. Medical School and have a run of tests done by their specialists. He put me on a lot of meds I knew nothing about. At first I was on very high doses of Prednisone and couldn’t stop throwing up so I stopped taking them until I spoke with him. He decided that I should start again but at a lower dose until we found the one my body could tolerate. Well seven years later I am still on Prednisone plus Mesthinon, Cellcept and IVIG once a week now. Only to find out we should have stopped the Prednisone after about 8 months. Anyone with MG who would like to relate their stories, maybe there are things I can relate, too. I would like to know what is going on and what new things are out there. I have been eating much healthier and wanting more freedom to be with my family! Mostly to have a life besides Doctors and treatments! LOL Thanks for the time it took to read this. It’s my first time

Liked by grammlyn

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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You are welcome. @gretagean

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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@gretagean i can speak from my personal experience, I have other autoimmune diseases too. Ulcerative Colitis is the other one that gives me the most aggravation. I was told by one doctor that I had celiac disease as well, but my new University of Colorado docs have said my celiac test is negative. I’ve just learned that I have MGUS and I’m being tested for multiple myeloma. Apparently they are linked with autoimmune diseases. I will have the second round of test results back sometime this week.

The way I deal with having a full “dance card” is the same as I would at a dance! One dance at a time. It has been an effective way to live my life so far, but I admit this last one is knocking me off my normal way of dealing, so I understand your post very well. Re your question about nightshade plants & diet. I have eliminated grains (NO wheat), legumes, processed food, all oil except olive oil, & dairy. I do not seem to have a problem with peppers or potatoes. I did this elimination by trial & error over a lot of years.

Let us know how you are doing.

Sending you positive vibes

Abbey

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?

@gretagean

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?

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Hi @gretagean,
What a lovely sense of humor in your message, even though it must be so frustrating to have these symptoms!

I’ve found a few members who have talked about Mestinon in the past; allow me to introduce you to @nan45, @julian130, @seashellgal, @whtwater, and @hope2bhealthy. I hope they will give you their perspective about taking the drug.

@gretagean, I noticed a few comments from other members about “the generic version of Mestinon; ” is that what you are taking? Have you come up with any methods to cope at home with the shaking of your hands?

I have posted earlier in the MAC group but have just this week been told i need to be tested for Myasthenia Gravis. aaaaaaaaargh!????
Eye Dr. thought it was necessary to git er dun now. Have appt for bloodwork on the 5th of Jan. … fasting …. but i have learned that it does not always show up in bloodwork. ????? The bloodwork will not be back when I see my primary care doc on the 10th. Have hip replacement surgery scheduled for the 23rd. A friend whose mother struggled with and finally died from this auto immune “thing” recommended a Dr. James Howard … neurologist at UNC in Chapel Hill. i live five hours away! I have put in place all that was suggested to me in the forum on MAC. Have a date with ID doc in winston on the 6th. Also deal with PPS .. post polio syndrome. I am 76 years old an got the Polio virus when i was 4 during the epidemic here inN.C. Spent 7months in the “camps” that have been called The Miracle of Hickory, N.C. Learned to walk again an my parents NEVER treated me as a victim of anything … ergo i have never percieved myself that way! Have always been VERY active and an activist! . I have been attributing things that are new and “not nermal” HO! fer me to PPS. Am not sure anymore what is the right question to ask! My friend said Dr. Howard invented the machine that can test for this “thing” that will not make you feel lak you b gittin electrocuted! I have had tests that feel just like THAT several times in the past. PPS being the answer. Here’s a question. Do you know someone in Winston Salem, perhaps, a neurologist who is closer? Am supposed to have hip replacement surgery on the 23rd Jan. 2017 after having had to cancel surgery the 19th of this month as i got sick! I am SO GREAT FULL for this site. Thank you for this site!!!!!!!!!!!!!!! Merry Merry evrybody!

@nelisabeth

I have posted earlier in the MAC group but have just this week been told i need to be tested for Myasthenia Gravis. aaaaaaaaargh!????
Eye Dr. thought it was necessary to git er dun now. Have appt for bloodwork on the 5th of Jan. … fasting …. but i have learned that it does not always show up in bloodwork. ????? The bloodwork will not be back when I see my primary care doc on the 10th. Have hip replacement surgery scheduled for the 23rd. A friend whose mother struggled with and finally died from this auto immune “thing” recommended a Dr. James Howard … neurologist at UNC in Chapel Hill. i live five hours away! I have put in place all that was suggested to me in the forum on MAC. Have a date with ID doc in winston on the 6th. Also deal with PPS .. post polio syndrome. I am 76 years old an got the Polio virus when i was 4 during the epidemic here inN.C. Spent 7months in the “camps” that have been called The Miracle of Hickory, N.C. Learned to walk again an my parents NEVER treated me as a victim of anything … ergo i have never percieved myself that way! Have always been VERY active and an activist! . I have been attributing things that are new and “not nermal” HO! fer me to PPS. Am not sure anymore what is the right question to ask! My friend said Dr. Howard invented the machine that can test for this “thing” that will not make you feel lak you b gittin electrocuted! I have had tests that feel just like THAT several times in the past. PPS being the answer. Here’s a question. Do you know someone in Winston Salem, perhaps, a neurologist who is closer? Am supposed to have hip replacement surgery on the 23rd Jan. 2017 after having had to cancel surgery the 19th of this month as i got sick! I am SO GREAT FULL for this site. Thank you for this site!!!!!!!!!!!!!!! Merry Merry evrybody!

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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?

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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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!

@gretagean

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?

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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?

@gretagean

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?

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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.

@saur1994

my father have face a disease of myathenia gravis problem what can i do.i really dont know and his health decline continuously

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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

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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

@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.

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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

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