[S.]

I have had restless legs for years. Several years ago, I also started having hamorris cramps in calves and feet. I was not diagnosed at the time and began taking magnesium. I took small dose and also applied a mg cream Much relief! It also took the edge off of work stress Approximately a year later, I was diagnosed with MG. Not sure if cause or coincidence. I try to get most of my MG via food, but take a multivitamin, too.

[S.]

Yes! I had forgotten about this until today when I almost fell ‘off’ of the crosswalk! LOL

Joe’s description of it being like walking on a boat is spot on. And if I lose balance while standing still, it is like I am tipping over.

Interesting side note- my neuromuscular specialist in MG told me that both of these things were nonsensical and he had never heard of them. People, please tell your doctor everything, even if you think it sounds weird or silly. The only way for our doctors to get the education they need on how to best help us has to come from us.

[S.]

Not sure what first symptoms were, as so many things can be tied to MG. One weird thing I remember happening often, at random times, and with no apparent reason, was the floor trying to trip me! Usually on my left foot, which I now recognize as foot drop. But the thing that first got me going to the doctor was that I was no longer set on ‘go’ all the time. In fact, I was finding it difficult to find energy-physical and mental- to continue working a full time job and 6 part time jobs along with social obligations and volunteer work. The doctors all suggested that it was due to ‘old age’ (at 50! SMH) and said to slow down. Gradually, I dropped part-time jobs til I was left with only 1 in addition to my full-time high stress hospital job. I had been having my left eye close randomly, but chalked it up to allergies, and since it never really affected anything other than appearance, I always ignored it. After some years of having this happen, my eyes started feeling very tired, along with the drooping. I had mentioned this to my most recent at the time doctor who initially attributed it to eye strain. As most of my work revolved around computers, it seemed reasonable. Then one day at work, I was powering through, typing on my keyboard,and my boss stopped at my office and asked if I was awake. What a silly question, I thought, and asked her just how I could type while asleep. She said my eyes looked shut. I called my doctor and asked if he wanted me to send a photo of what it looked like when my eyes ‘got tired’. He told me to come in immediately. He was the first person to suggest MG. BTW, during the last three or four of these seven years when I was trying to find out what was happening, I would also have random heaviness in my limbs. I described it like how you feel after working out to exhaustion, heavy and burning ache. Around the time a doctor first suggested MG, I also started having eye twitching, that graduated to random facial muscles twitching. The tongue fibers jumping was wild! Quickly following, was slurred speech and desperately needing a nap by 1pm. Then, head tilt, difficulty swallowing, and a period of mostly being confined to bed because I couldn’t even turn over without help. From diagnosis 2017 to 2021, things went downhill. But things have improved (another story), and while I am slow and take lots of rest breaks along with long naps-I can do most of the things I need to and may things I want to. I live alone again and do my own errands and yardwork, including moving rocks in Alabama summer heat. Off all MG meds since 2/2021. Hope I continue to improve and hope this brings some hope to those who have been newly diagnosed

[S.]

Yes, I have other health issues, but MG drives ALL of my decisions. Will a med make symptoms worse? Have studies been done on the impact a supplement may have on symptoms? Are there places for me to easily sit and rest awhile at an event or activity? Are stressful topics of conversation likely to come up that I will not be able to steer away or is there a way that I can remove myself from that area for awhile if needed? If I go alone somewhere, can I get home or to a safe place if symptoms go nuts? You get the idea…

However, rather than thinking of it as MG controlling my life, I consider these things to be me taking control, in order to live my life the best that I can

[S.]

Absolutely! Sometimes it comes on gradually, others-wham! When I have other symptoms like slurred speech and/or balance and foot drop issues, people may think that I am drunk or have had a stroke. On a few occasions over the years, it has been bad enough to forget where I am or how to get to where I am going for a few minutes

Worry/stress makes it worse. If it is very mild brain fog, a short break and a caffeinated soda help. I make sure to keep my blood sugar in balance, as strong dips make fog worse. That means staying away from refined sugar and simple carbs as much as possible.

If fog has progressed too far for a brief sit down and quiet to help, I just take a nap. Sometimes my day just has to stop before it gets started going.

Does MG interfere with my work life, ADL, and social activities? Duh! But, in my case, everything was worse during first two or three years after diagnosis, then has gradually, slowly improved over the past four. Sometimes I wonder how much of my improvement can be attributed to my learning better ways to deal with MG-both physically and emotionally. I gauge how far to push things and try not to overdo it. And I certainly do not worry about other people’s opinions of what they think I can and cannot do. When I get tired, I stop. That may be for 15 minutes, or it may be for a day or more. Other people don’t live in my skin. Seriously, I think learning what I can control and not stressing over what I can’t has helped more than any of the meds I took. Getting into better general health has also played a part. Doing what I can, when I can, and trying not to compare it to what I ‘should’ be able to do is a hard lesson, but makes a major major difference. Best wishes!!!

[S.]

I have not always been able to exercise, as I once was so weak that I needed ADL help live in. On top of MG, my muscles has begun atrophying. When I started feeling better, I knew that I had to use my muscles, or I could become bedridden and not know if it was due to MG or no muscle strength. So, I started with a few steps and a helper, resting when needed. I am walking around the block, or at minimum halfway down the street and back, and doing exercises with body weight-squats, wall pushups, arm raises, leg lifts- all on my own, or with my dog. The secret for me was pushing only slightly more each time, even if I felt fine. Since I have always been a push it to the limit sort, this was the hardest part. I overdid it a few times because, “I still feel good!”, and not believing that I was doing much of anything to start with-resultes in being out of commission for a few days. I’d rather do some exercises and still be able to get through my day everyday, than push too much and only be able to handle One good day, then a week on my back. Allowing myself to only add a few more steps or a couple extra reps was key for me.

[S.]

Thanks for sharing your experience, Bob.

While the reporting of time table and ‘all new cells’ doesn’t quite match up to the real process, I also credit fasting with being helpful with my symptoms. Autophagy begins a clean up process of some ‘broken’ cell parts. The longest I have gone is five days. My standard fast is 48 hours with no food and only water. No supplements, no meds during this time. I’ve only done 3 since the initial one in Feb 2021. I wish I had the chutzpah to do 48 hours every week, or even every month, as it has been greatly beneficial in my case. BTW – I use the time after the fast to eat properly – clean, whole foods and supplement with a whole string of beneficial things I am not in remission, unfortunately, but my symptoms have decreased enough over 4 years that I have progressed from requiring live-in help for ADL to finally being able to do my own yard work this year. Still slow, still need many breaks-some whole days off-but no longer using wheelchair, walker, or even cane on majority of days. Slow progress, but enough to where my neuro says that he cannot make this big of a change with conventional treatment, and I only need to see him if I start getting worse. Do I believe that losing some weight has played a part? Yes. Being able to walk again, just moving!, has been helpful, too. These physical improvements have helped my mental/emotional well-being, too. Do I ultimately give God the credit? Yes, I do.

Long post, but folks need to know that there are options with hope… at least for some of us. And it is beginning to sound like more of us are having positive experiences!

[S.]

Thank you for sharing. Very timely for me as doc is insistent on statins. TC only mildly elevated and VLDL is trending down as I improve my food choices. I have been doing better in general since supplementing a variety of things, from NAC to B vites. Not willing to risk current level for statins.

[S.]

MG did not seem to make a difference in weight, but my weight seems to make a difference in MG symptom/severity. A 30 lb loss three years ago was simultaneous to an improvement. After gaining that back, I have declined some. Three days ago, I began working towards losing again and eating a better group of nutrients in general. Has not been enough time to tell yet, but I will keep you posted.

 

[S.]

https://pubmed.ncbi.nlm.nih.gov/29341125/

Regardless of whether probiotics wind up as part of our standard protocol or not, there are so many studies of how helpful they are to us even when everything seems rather ‘normal’. The link I attached shows many studies specifically on MG and probiotics and/or autoimmune neuro issues and probiotics. So—I have added probiotics to my regime.

[S.]

Double vision is a bummer! LOL How are you doing with quitting vaping? Your lungs are so important! As an ex-smoker (33 yrs off), I remember how hard it is to quit. I still dream about having a cigarette ever so often. Hang in there!!!

[S.]

Yes.

Short version- 3 doctors (1 neuro, 1 neuro muscular specialist, and 1 hospitalist) have told me I have clinical MG and given positive diagnosis based on symptoms. All tests come back negative with EMG showing only slight chance of MG, which 3 specialists have said is so little they are willing to definitely say that I do NOT have MG.