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

Hello @dschmidt,

I’d like to add my welcome, as well; we’re so glad that you’ve joined the Connect community to seek some answers.

I see that one of our members, @seashellgal posted a message about eye surgery (due to MG), and I hope she will return with some insight for you; here is more information from Mayo Clinic about the procedure: http://mayocl.in/1KeN0gh

In the meantime, I’m confident that @socalgal, @iggeez1416, @whtwater, @bea2377, @sunshine56, @gretagean, @lynnes, @mom2mba, @dogmamat, will join in to share their experiences with you.

@dschmidt, could you tell us more about your symptoms? How are you managing day-to-day?

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@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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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

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@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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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.

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Well MAYBE I can hear some ways to ease my pain and continue on it life. When I was first diagnosed with RA, my kids laughed at me and said you don't have RA. That is because there are few outward issues except, being seriously tired, feet and legs hurting, having difficulty lift legs to walk up stairs, and just plain PAIN and seriously being tired. I can go to sleep any moment of the day. Just rest my head on a pillow an I am out. I take no Narcotics and I like that way. At first, I was diagnosed as FIBO. That was going on for about 10 years. My RA was getting worse but no one had diagnosed with with RA YET. My family doctor would ask, WHERE do you hurt and how severe. EVERYWHERE was my answer. He started me on CODENE of all things. I became addicted and chose to come off of it by myself. I nearly died Finally my doctor did a blood test. I had not asked him to do a blood test in the past as I thought he knew what he was doing. Well, after the test he ran, he was shocked. I had RA. He sent me to a Rheumatologist to confirm his findings. Where I lived I was 2.5 hours away from any well trained doctors. I decided to move to Texas. I have been treated at the University of Texas Medical Center for about 6 moths. I am also seeing an Oncologist as my Rumy thought the blood work showed something that would need help and quickly if it were true. HOW DO blood tests change? Especially if they show a blood disease. When saw the Oncologist he said everything is ok ad I don't see any issues. Back to RUMY who is trying different series of medications as well as Infusions. I will have my 2nd one next week. I must say that for two days after the Infusion, I was SICK. But by the 3rd day, I was feeling so so so good. Now it is about 10 days and I am feeling poorly again. I am faithful about taking my pain med. Even if I am not hurting. I found if I am faithful about keep my pills coming the pain is stopped before it starts. Not all of it, but enough to give me a life again. I am so happy this site is here. I too have immunity issues. I am being very careful around family when they are sick. Shopping is quick and I do not shake hands.

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Sorry, I meant I was addicted to Morphine, not Codene.

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@kanaazpereira

Hello @dschmidt,

I’d like to add my welcome, as well; we’re so glad that you’ve joined the Connect community to seek some answers.

I see that one of our members, @seashellgal posted a message about eye surgery (due to MG), and I hope she will return with some insight for you; here is more information from Mayo Clinic about the procedure: http://mayocl.in/1KeN0gh

In the meantime, I’m confident that @socalgal, @iggeez1416, @whtwater, @bea2377, @sunshine56, @gretagean, @lynnes, @mom2mba, @dogmamat, will join in to share their experiences with you.

@dschmidt, could you tell us more about your symptoms? How are you managing day-to-day?

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I am sorry I do not know what MG is. My eye sight has gotten worse with RA and I am sure it is my medications

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I can relate. I was first diagnosed with Devic's Disease in 2007. I was paralyzed midback down. Had complete weakness. I lost bladder control. 2 years later while I was already weak I was also diagnosed with MG. I couldn't hold my head up and had double vision. I couldn't keep my eyes open. I was written off as terminal and told I didn't have a long expectancy. That was 6 years ago and take Mestinon, Prednisone and IVIG. I taught myself to walk but have to use it for long distances as I fatigue easily. I use an electric wheelchair for long distances.

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

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@rapidgirl1

I can relate. I was first diagnosed with Devic's Disease in 2007. I was paralyzed midback down. Had complete weakness. I lost bladder control. 2 years later while I was already weak I was also diagnosed with MG. I couldn't hold my head up and had double vision. I couldn't keep my eyes open. I was written off as terminal and told I didn't have a long expectancy. That was 6 years ago and take Mestinon, Prednisone and IVIG. I taught myself to walk but have to use it for long distances as I fatigue easily. I use an electric wheelchair for long distances.

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Hello @rapidgirl1

I see that you just joined Mayo Connect – welcome! I am so pleased that you have made such great progress after being given such a dire diagnosis. Congratulations!

If you are comfortable sharing more, please let us know something about how you helped yourself to make such progress. Was it physical therapy or other methods? Was their a particular doctor or other health professional that assisted you?

I look forward to getting to know you better.

Teresa

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@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

@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

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@rapidgirl1

I can relate. I was first diagnosed with Devic's Disease in 2007. I was paralyzed midback down. Had complete weakness. I lost bladder control. 2 years later while I was already weak I was also diagnosed with MG. I couldn't hold my head up and had double vision. I couldn't keep my eyes open. I was written off as terminal and told I didn't have a long expectancy. That was 6 years ago and take Mestinon, Prednisone and IVIG. I taught myself to walk but have to use it for long distances as I fatigue easily. I use an electric wheelchair for long distances.

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I am trying to unsubscribe from this and I don’t know how. Please unsubscribe me from all

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@rapidgirl1

I can relate. I was first diagnosed with Devic's Disease in 2007. I was paralyzed midback down. Had complete weakness. I lost bladder control. 2 years later while I was already weak I was also diagnosed with MG. I couldn't hold my head up and had double vision. I couldn't keep my eyes open. I was written off as terminal and told I didn't have a long expectancy. That was 6 years ago and take Mestinon, Prednisone and IVIG. I taught myself to walk but have to use it for long distances as I fatigue easily. I use an electric wheelchair for long distances.

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Hello @msupacker — welcome to Connect. When you get the email notification for this message, go to the bottom of the email and click the Unsubscribe from this thread and that will stop the email notifications from getting mailed to your email address. You can also click on the Account Settings link to go to your account settings where you can control when and how often Mayo Clinic Connect sends email to you by choosing your Email Notification settings.

Hope this helps. ~ John

Capture

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Do you know if protien drinks are good to drink with this disease to help improve muscel sttrength

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@fguziejka

Do you know if protien drinks are good to drink with this disease to help improve muscel sttrength

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Hello @fguziejka, and welcome to Connect. Great question. I moved your discussion and combined it with another discussion titled Myasthenia Gravis. I did this so you would be introduced to the other members talking about it. While we wait for them to weigh in, would you mind sharing more about your diagnosis? What sort of things have you been doing to try and improve muscle?

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Thanks for responding Justin I din't expect anybody to get back to me. I have all the classic things, the drooping eye started about a year ago, I went to a opthopmologist and she couldn't find out why from her tests, she told me I could have a brain problem and referred me out.

I never followed up on it.

June 4th I had what I thought was a stroke and when I went to the emergency room they treated it as a stroke, the blurred vision, the double vision, the speech really bad. The swallowing problem is the biggest issue and it's is been going on for well over a year before the drooping eye, I thought it was just acid reflux.
The neurologist that seen me in the hospital ran a series of blood test since a stroke didn't show up on the mri and the blood came back abnormal indicating to him the Myasthenia Gravis. He is treating me for it with two meds that are helping out but at night, voice is still almost 70 to 80% not understandable and the swallowing continues to be a big issue. Still real nasly in and out during the day. I have changed my eating format as well adjusted the types of foods I eat to make it more easily to deal with. He also diagnosed me with a brain tumor, so there's not much I can do with that at all. I was wondering since our muscles are going to become real weak and lead to respiratory death (possibly) if it wouldn't be a good idea to build those muscles up with a lot of protein to prolong the inevitable. Protein drinks for example. Again, thanks for responding to me. Frank Guziejka, CLU

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