[Tina]

I was always told I had a beautiful smile. So of course I lost that. My eyes are dull now and they used to be my favorite thing about myself as they’re blue-green. I’m still hopeful inside but when I look in the mirror I almost can’t believe what has happened to me

[Tina]

My first symptom as a kid was repeated falling and fatigue, so of course it was taken seriously. Later as a teen, it was vision, and as an adult, it was dropping things, then speaking, swallowing and breathing. I’ve been taken seriously all along until I got my last MG expert, who repeatedly tells me at my once a year only appointment that we’re lucky I’m not as bad as her other patients. As if choking on your own saliva and not being able to breathe at any moment of the day is not bad enough!

[Tina]

Yes all of this sounds familiar, nothing really I could add, except that I’m a people person, and have learned to cope with being stuck at home with fatigue by using email, text and zoom. Now it’s exhausting doing that

[Tina]

I’ve been to the beach and an outdoor concert and meals in the last few years, and played with the grandkids outside and in the pool. This year I’m tired, not sleeping well, haven’t done much outdoors, and have cancelled outdoor events and even a lot of indoor events. Didn’t have success in getting my MG dr to increase my meds, but I’m going to my neurologist this month to talk to him before I go see my grandkids. Always looking for improvement, ever hopeful

[Tina]

Yes I’m finally able to exercise standing up to an online video by my insurance company. In the past I was not able to due to balance and stamina issues. After I changed my diet to plant based, got off most dairy and started taking more supplements, I lost 20 lbs, felt better and started doing some chair exercises, and then added resistance bands and hand dumbells. I now can do it every other day and feel even better. I can’t always stick to that schedule, but I do feel better overall, as long as I’m getting at least 6-8 hours sleep, which is never a given with MG

[Tina]

I don’t drive and there’s only one in-person group in my area that meets at night and weekends which I can’t make. So I’m in a lot of virtual groups on different platforms. I look forward to them because sometimes it just makes me feel better knowing I’m not alone, and I also see the problems others have that I don’t have, so it makes me feel more grateful. I can’t say that I feel I’m doing anyone else any good by my being there, and hope they don’t mind me. I can’t imagine dealing with this stupid disease by myself

[Tina]

I’m doing the zoom exercise recordings from my insurance company every other day. I enjoy them but the next day I’m somewhat tired but I feel ok and am happy I did them. But the third day the fatigue hits me bad and I can’t get out of bed for hours. The fourth day I’m ok and do them again.

It’s strange because I thought the next day after I would feel bad as usual with other activities like going out or cleaning. It always takes me a day to recover. But with these exercises it seems to wait an extra day. I’m thinking it’s because I get endorphins from the exercise which keep me energized for the day after.

I don’t know about that really but I do know I need to exercise because of my cardiovascular disease and resulting muscle wasting with MG especially breathing muscles. It’s hard to manage this disease with all the other medical conditions and activities I have to do.

[Tina]

I use a cpap machine which helps keep my breathing stable so I don’t wake up as much. I use in ear earbuds and put on something long-playing and it usually helps to lull me to sleep.

I’ve always been a great 8 hour sleeper usually on my left side. However since I’ve been on Mestinon and my MG has progressed, I’ve developed sleep deprivation issues which seem to happen practically every night. I hardly ever take a nap but do rest and meditate throughout the day. Taking a walk or some kind of exercise like stretching, lifting small weights/ resistance bands or getting on my elliptical machine, when I feel good, helps me

I follow basically the same diet everyday: water, 12 oz decaf coffee/almond milk/hydrolyzed (sp?) collagen protein powder mix 3x a day, for 30 oz protein daily and a lot of calcium for osteoporosis. Green tea & water, and crackers if I’m nauseous. Light lunch of fruit or vegetable and the coffee mix. 3pm meds and snack. Dinner is my main meal of meat or rice/beans for protein and veggies, and coffee mix and dessert. Meds and water before bed. I’ve found if I stick to this it eliminates stress of trying to remember the nutrients and water I need, and keeps me from eating junk food so my weight stays stable.

Stress plays a big part of sleep issues. Since I’ve gotten off dairy and bread my nasal passages aren’t congested and I sleep better. I only eat some kind of bread or dairy or something containing any sugar in the daytime after lunch. That way I’ve fasted about 12 hours overnight, my metabolism is faster while awake and my stomach is full from dinner while I sleep.

It’s been working for me and I no longer wake up 2-4 times a night which used to kill my REM sleep. Restless legs still bother me some while I’m awake since I’m off Ropinerol, but I’m Gabapentin 3x a day and put my legs up and keep my mind occupied with a project and it seems to help a lot. I take a herbal supplement with B vitamins and ALA called Healthy Feet and Nerves by Terry Naturally I bought on amazon. I also take a lot of supplements and R-ALA and have almost no neuropathy symptoms in my legs anymore. I have a lot of nights where I get up once a night and mostly sleep 6-8 hours. I still feel tired and am having my typical summer migraines again though

Living with MG is like having a 2 year old—it requires a tight schedule for me or it takes over my day/night. My neuro won’t give me any sleep aids because of my breathing and slow heart rate, so I’ve had to come up with ways to feel in control. May not work for others but it does for me. Hope this helps someone because insomnia is the worst for MG. I’m always on the lookout for a new sleep fix someone has

[Tina]

Pyridostigmine 60mg 3x a day last few years, up from 30mg 3x. Lately more fatigue affecting walking and activities, which I think is due to stress and summer sun, as migraines are back somewhat. In the am it’s hard to get out of bed for dizziness and fatigue. An hour before a dose I get the fatigue, lid droop, a little double vision. Sometimes breathing and swallowing issues in the afternoon, and hard to hold head up.

I take a collagen and protein powder in my decaf coffee 3x day so my weight has stabilized from 114 to 121 lbs now. Having sores inside my mouth again, which happens a month or two for a few times a year, not sure why. Have an appointment with my GI dr next month.

My MG neuro didn’t change the med this year again so I guess I’ll just poke along as usual and see how it goes. Summer is usually the worst so if it gets bad I’ll call her and see if I can take an extra dose but I usually just stay inside and rest. I’m already on 2 seizure meds for those and headaches so she’s not keen on changing my MG meds. August I’m going to see the grandkids and I’m trying to rest up for that now lol

[Tina]

I went to a mostly organic plant based diet for ease and convenience as well as health issues. I only chew animal protein a few times a week as it’s just too hard. So I added collagen and protein powder shakes 3 times a day fortified to get my calcium daily requirement and extra animal protein. I’ve lost 20 lbs in a year, which put me back in my healthy range and fixed my cholesterol issues. I also gave up most processed food but allow some cheat foods lol. I feel better overall too

[Tina]

For me it’s fatigue, which will bring on not being able to hold my head up, and swallowing and breathing issues. I walk slowly anyway due to severe osteoporosis which helps to conserve strength and get through the day. I usually crash about 2-4pm and take another dose of Pyridostigmine to make it to my 7pm dose. I also do a lot of standing and some stretching exercises while holding onto something, and as many chores sitting as I can. I drink fortified almond milk with collagen protein powder 3x a day and a lot of plant based proteins, vegetables and supplements. It’s hard chewing meats but I try to make the effort each day. So far I’ve been fairly stable on 60mg 3x a day but I’m feeling more tired and weak as I’ve lost 20 lbs on my very small frame in a year. Always seeking another way to fortify my nutrition.

[Tina]

I’ve only had to get a new test when I get a new doctor, after showing them my previous test results. I guess they want to see if anything changed

[Tina]

I went through this issue when I was on 30mg tabs which the manufacturers supposedly stopped making. I had to cut the 60mg and they of course crumbled everywhere. I had to get an extra rx so I could get enough. I’ve since learned to ask for an extra rx on all my pills, one for mail order and one for the local pharmacy. That way I can start stockpiling somewhat by staggering the filling of them between the two by a week or so. Since then I’ve never run out but have the equivalent of an extra 3 months supply of almost all of them and I’m stress free as much as can be I guess

[Tina]

Reading everyone here, I’ve picked up some good tips. Unfortunately (?) I have the opposite problem and have to work against becoming impacted. I can’t tolerate Miralax and am on a plant based diet to eliminate bad cholesterol, so my GI dr says I have a lot of plant fiber already, which should of been helping. I just started taking pepcid minimum at night before my Parkinson’s med to prevent the awful nausea, and Pantopraze sodium dr 20mg to help my stomach burning, which my MG neuro says is not caused by my pyridstigmine 60mg 3x day. My stomach does feel better and with 8-9 glasses of liquid a day, and taking my meds with food, I know that helps. No one can figure out why my bowels aren’t moving. All my drs said it was the MG and spina bifida since it involved nerves and muscles in my intestines, but my MG neuro said no, it’s the Parkinson’s, and that dr said no. I’ve got a new neurologist I’m going to see this month for another opinion on the Parkinson’s and seizures, so maybe he’ll have some insight. Meanwhile my GI dr said my CT abdomen scan showed only a thickened bladder wall, and my stool tests were normal, so he put me on Motegrity 20mg to try to get the muscles in my intestines to move better. No one’s offered any insight on the nighttime bladder frequency/ urgency. There’s no infection and the Parkinson’s dr said nothing. Interestingly, years ago I spent a week in the hospital with seizures and bowel impaction, and the colorectal surgeon told me to stay off plant fiber unless it was cooked really soft. So I’m going to give up the plant burgers and take some probiotics and see if that helps. I’ve been eating greek yogurt but it’s not enough. I’ve only been taking 2 of my pyrido a day, so I’m going to try the 3rd dose and see if it helps. I’ve had diarrhea issues in the past—it seems to come back every 5 years or so. I use kefir, probiotics and greek yogurt when it comes back, along with bananas, tea, bread products and jello/gummies to reset the flora and bulk up again. It’s just I’ve rarely ever been blocked up, only surrounding surgeries. The only thing I’ve had done recently is an endoscopy/colonoscopy in October in which I was put to sleep and a precancerous polyp removed. Maybe that was enough to slow my intestines down again but that’s been awhile ago. It’s always been a battle between the diarrhea/constipation. The joys of MG/Parkinsons/spina bifida/seizures. Not that I’m complaining lol 😂

[Tina]

Not for my MG, but definitely for my Parkinson’s and seizures from young doctors, so I’m getting another opinion from an older more experienced neurologist

[Tina]

I talked to my dermatologist about frequent dyeing since my hair was falling out and not regrowing. She said there’s no scientific studies linking dyeing to it. She said she couldn’t treat me internally since I have MG and am already on meds for systemic inflammation, but that the other concern was nutrition for the hair and my nails which are splitting. She gave me a steroid solution for my scalp and said to try Nutrafol. She said if I could take individual supplements instead since my multivitamin already had a lot of the same ones. So I take Centrum and Olly gummies since they have most of the same ingredients for a fraction of the price. When I went back in 3 months she said it was definitely growing back. It’s been 6 months now and even my family has noticed it’s growing in, and my nails ate stronger. I still wear hats, wigs and wide headbands to protect my scalp from the sun, but I’m much happier now and sometimes wear no head covering online, at least when I’ve dyed my hair

[Tina]

Hi Kim. My osteopenia at age 40 went to severe osteoporosis-3.9 at age 60 and is still there. I wasn’t able to take Boniva due to bone pain or calcium pills in my 40s and just relied on milk, diet and exercise. I reviewed Prolia and decided against it. I talked to my neurologist and cardiologist about Evenity and decided to do it. I talked with another patient about her experience after the 12 months of shots and she said her Dexa scan improved substantially with no side effects. I’m into my 4th month now with no side effects. It has to be taken at room temperature and injected slowly to avoid rashes and pain. The 2 shots are one into each upper arm and the effect is less than a flu shot. I’m pleased with the experience so far. Absolutely no impact to my MG. Evenity is the only treatment that is dual action, meaning it both tears down bone like exercise and rebuilds it as biophosphates do like Boniva or Prolia. After the 12 months then a maintenance drug is needed like Boniva or Prolia but I’m going to try Reclast instead. I lost 1 1/2” in my height the last 2 years and an orthopedist xrayed my spine and said it was compressed. My balance and gait has been bad for years so I knew it was just a matter of time before I fell and broke something as I fall a few times a year with seizures. I have an endocrinologist that manages my osteoporosis and the Evenity and she knows how hesitant I am to take other drugs with my MG. Look into Evenity and see if it might be right for you. It’s a very expensive drug and took 9 months to get it approved by my insurance company, but when I explained all of the foregoing and the fact that they would spend a lot more on a fall and fracture that would domino into other health issues, they approved it. If they didn’t I was seriously considering getting a different insurance company as I knew I was at the end of the road with my osteoporosis. All the women in my family broke a hip or spine and didn’t really heal after that. I have so many problems with my spine and left hip so I knew I had to do something and I’m glad I did this so far. After a year I’ll go on the Reclast and if it doesn’t work then I figure I’ll at least had this year without much worry

[Tina]

That’s my main symptoms. Gets progressively worse. Diagnosed 6 years ago. Just had the Mestinon generic tripled from 30mg 3x day to 60mg 3x day with a new doctor’s second opinion. Symptoms a little better but I can tell eventually the new rx won’t be enough as they’re still progressing. Not sure what I’d do next. Symptoms never really go away, just fade at certain times of day. Try a second opinion

[Tina]

I have neuropathy and take meds for it. It’s hard for me to imagine brushing my skin because of the pain. I’m sure it would help though based on these posts. I’ve started to massage my face with a silicone brush since my dermatologist said I have systemic inflammation and it’s causing my rosacea to flare again. Since I’ve been doing this, it’s helped immensely to ease the inflammation and empty the pores. So I think this brushing or massaging would help all over

[Tina]

I still refuse to admit that I’m becoming depressed. But I will say that the feelings with MG are like a bad dream, that while waking from, you become aware it has components that are true, and you hope you’ll never have that dream again. That fear alone is enough to ensure you’ll have a similar dream again, which now has taken on a reality itself. I know MG is a permanent reality in my life, and so are the moods that come with it. I’m not frustrated or angry about it every day, and some days I still feel happy. So I don’t think I’m depressed, just having various feelings and moods about it and from it. Maybe I’ll become depressed, and I’ll probably deny it then too. But if I can put that off, keep MG from totally consuming me, I’ll feel like I’m still on top of it. But I have never had the level and degree of help in my life than I do now. I was always the helper, the doer, and that has definitely reversed, and I’m not happy with that, although I’m becoming more accepting of it.

[Tina]

It makes me nauseous too and I eat crackers and water which coats the stomach and it helps

[Tina]

Thanks. I started collagen powder along with almond milk lattes. I’m getting my last Evenity shot next month and then dexa scan the following month and see the doctor. Can’t wait to see the results, which I hope will show some improvement. Regardless I’ll still keep using the collagen and almond milk for the bones. I hope they’ll improve some over time. They should since I’m getting regular protein and calcium 3x day

[Tina]

Blood test results showing antibodies are the best diagnosis tool for MG if you can get that piece of paper from the lab. It ends all arguments with the medical establishment. Of course, that doesn’t mean you’re going to get the right treatment. And even when you do, it’s not like the MG is going away or the treatment will stay effective. MG is a marathon and a frustrating one at that. You’ll need to steel yourself for it, emotionally and spiritually. I’ve got over 15 medical diagnosis on paper, including some of the ones you state, and it’s overwhelming for some of my doctors. When I go to a new one for a second or third opinion on something, they actually think I’m “faking it”, as two new ones said, “no one could have that much wrong with them“. Another said, “I don’t wanna get lost in the weeds“. So I don’t refer to any except the issue at hand. Anyway, sorry for sounding glum but it’s another one of my down MG days. In a nutshell, try to get your diagnosis on paper, shop around for the best MG neurologist or movement disorder specialist that handles MG, involve yourself in the online groups to avoid overwhelming friends and family, and calmly advocate for yourself with doctors and insurance companies. After you’ve done all that, then you actually get to enjoy your day while trying not to create a flare. Try to find time for a hobby or two that you can enjoy to take your mind off of all this guff.

[Tina]

Same with my voice. I used to sing. Now can’t get a line out. Going for speech therapy soon