Have you fallen due to Myasthenia gravis?

[Daniel]

yes I have, usually happens now when I approach my next infusion….. over the last 5 Yeats I fell often…as I progressed through treatments it has gotten a lot better. I have a lighweigght mobility scooter that I use now very rarely. I have also used a walker. I am very tall so it has cost me extra to secure things. such as a cane for tall and a walker for tall…….like I said thought after about three Years my falling due to leg weakness has much improved.

[Eleanor]

I have fallen often throughout my life. Was diagnosed with MG in 2015. I’m now 78 and two weeks ago I tripped over a concrete parking barrier and severely bruised my left leg, ankle and knee. My entire left leg is swollen and black with red splotches and painful.

X-ray and MRI showed nothing broken. Then 3 days ago I fell and this time I broke my left foot and caused more injury to my left knee and ankle. I find I don’t pick my left leg up high enough to avoid stumbling or tripping over things. I have problems walking up stairs but can go down stairs ok. So far nothing has helped. I have both a rollator walker and a small battery operated scooter. I went 2 years without needing the scooter. But now have to use it. I went a year without using my walker but have needed it for the past month. I’m being tapered off prednisone 10 mg so don’t know if that has any effect or not. I had much more energy when taking the prednisone.

Ellie

[Tonykrony]

Hello Eleanor, and all others suffering with issues from MG

My sympathy to all as managing this disease is like a full time job.

I was diagnosed with MG in 2012. Had a MG crisis in 2019. Since I survived the 6 week icu stay. I have had many falls and fractures. Wrists, two cracked ribs, sprains on arms, elbows and shoulders. I’ve had some PT, but it has mostly been me working on my own to gain strength. I stopped using a 4 wheeled walker just two years ago. My limited pt was due to covid pandemic and my own covid exposure in Feb. 2023. I had covid and double pneumonia in my lungs. It took a long time to recover from covid and I believe I still have some residual effects from my covid exposure. It’s been a rough trip to get back on my feet, but I have done some exercise, walking, swimming and stretching. Vuvgart infusions have helped to walk better, but I still trip on everything. I smash my toes, and split open my feet in several areas. Seems that I just can’t get my feet coordinated to walk on stairs, uneven ground or inclines. The infusions have given me strength, but with the Vyvgart infusions, I still gain weight. I was 269 lbs at the start of my infusions in 10/22. NOw a year later I’m at 305 lbs. I eat healthy lots of veggies and lean grilled meat, no fast food, fried junk food low sugar, low carb, KETO and no soda. But the weight still continues to climbs So I know the struggle to maintain a balance in my life with this disease.

Hope you all have some good days and your bad days are less often.

[paul spychalski]

Fell toooo many times. Broken ribs, stitches, cuts and bruses. I’m on Pyridostigmine now and haven’t fallen in 4 months!

[Sharon Haw]

Yes, I have, both before and after MG diagnosis. 20 yrs ago, I noticed I was out of breath (gasping) after climbing 2 flights of stairs despite being very fit at the time. It was noted during the pulmonary function and stress tests that my exercise tolerance was lower than normal for my age and fitness level – I tired earlier, but no exploration of the cause was done. The doctor just said the lower exercise tolerance was “odd” given my good fitness level. Over the years, I occasionally tripped climbing stairs and on uneven surfaces. In 2018, I fell walking on an icy sidewalk causing multiple fractures in my ankle, requiring surgery and had a slow recovery. MG was triggered 3 months later just after I returned to work. Since then, I avoid walking outside because I trip on uneven surfaces and my feet often don’t clear stairs even inside. I got a good treadmill for safe exercise and walking poles for outdoors. I had a couple of falls that led me to temporarily pull my walker out of storage. I see a personal trainer weekly for weight bearing and balance exercises. For the most part, my MG is reasonably controlled with just mycophenylate mofetil, but I was recently prescribed a small supply of mestinon to supplement as needed when I notice more symptoms.

[James McCay]

I FALL OFTEN. I’M SO WEAK THAT MY LEGS JUST LOSE STRENGTH AND I COLLAPSE (FALL) FTEN (WEEKLY OR MORE). LUCKILY I TOOK JUDO FOR SEVERAL YEARS AS A CHILD; SO I KNOW HOW TO FALL TO DRASTICALLY REDUCE FURTHER INJURY.

[Andy Seles]

I highly recommend Tai Chi classes. I was a Tai Chi student for several years many years ago. On the few occasions when I’ve fallen my wife always points out how “gracefully” I’ve fallen and I always credit Tai Chi. “But you don’t practice,” she says. “But I do…in my mind,” I reply. But that is not really accurate. My body evidently has “Tai Chi” memory for which I am grateful. I do currently practice Chi Gong which I also believe to be beneficial.

[Mark Cox]

Yes I have fallen several times since I was diagnosed with MG two years ago, even was sent to the hospital after knocking myself out during a fall hitting my head on some cement stair steps I was coming down.

I’m 63 and was very active in pro motorcycling events where balance was key to the sport and took pride in my sense of balance but since MG I have fell over on motorcycles and bicycles while stationary in place. I can no longer close my eyes while taking a shower washing the soap away from my eyes without holding on to a safety bar or something stationary or I will fall. I have a hard time walking down rocky or rutted roads in addition to maneuvering myself up and down stairs while trying to maintain my balance without falling…

In short, I feel I have lost a majority of my equilibrium since MG. Hope that helps.

Mark

[Marlene Laird]

I have fallen several times over the years due to gMG weakness. I used to just use a cane when I left the house, or a walker if I had to walk a long way. I nearly fell quite a number of times around the house, then I fell twice within a few days of each other, so I felt like I needed to start using my walker full time to prevent any further falls and injuries. The only time I don’t use one now is in the kitchen because when I’m busy in there I trip over my walker. It’s not a large kitchen, so there is always something to grab onto, so it hasn’t been a problem.

[Barbara E.]

I fell once back in 2007 when I loss control of my limbs, but not since then.

[Tina]

yes I’ve fallen multiple times throughout my life, drs always thought it was due to my seizures. Since I’ve been diagnosed with MG, my neuro says I’ve always had it, and if I didn’t pass out first, then it was MG causing my legs to give out. Last week I decided to get 3 vaccines at once to get it over with before a trip: covid, flu and rsv. I never had a bad reaction from any vaccine, and last year I got covid and flu at the same time with minimal reaction. So I went for the 3 despite the pharmacist warning against it. Bad idea on my part. That night I felt queasy and decided to get up and go to bed early. Legs gave out and I fell, hitting my head on the wall and my hip on the carpeted floor and I passed out. When I woke up I threw up after trying to pull myself up and knew my daughter couldn’t hear me upstairs as I was too weak and dizzy to call out. I had broken my rule of always keeping my cell phone on me, so I was stuck sleeping on the floor that night. I passed out again and when I woke up I threw up twice and passed out again. When I woke up I crawled to my recliner to get my throw and pillow so I’d be more comfortable. I knew my daughter couldn’t lift me into bed anyway so I decided to make the best of camping inside. I woke up at 4am and I was able to pull myself up on the doorknob and could make my way to the bathroom to clean up and go to bed. When I woke up at 9am I told my daughter who of course was sympathetic and could see I was alright. I later got a goose egg on my head and bruise on my hip which is still there. My friends were less accepting since they didn’t see me in person and wanted me to go get evaluated asap. I told them we decided I was ok as I had no symptoms, and I’d tell my drs at the next visit, just like I did about the last two times I fell this summer in my living room, without a seizure, and got all bruised up. Seems like now the MG is making my legs give out first before I pass out. I finally got a new neuro who increased my rx since those 2 falls, which we hoped would help, but it looks like it hasn’t. Anyway, I’m back to dragging my cell phone with me 24/7 and I just bought some hip protector pants which also have a tailbone pad, since I have severe osteoporosis from all that prednisone I used to take. I don’t go out much anyway, but I’ll definitely be dragging my cane. I just bought a setup for taking care of myself in bed at night so I don’t have to get up to go to the bathroom 2-3 times from my Parkinson’s and risk falling. I got rid of my walker and wheelchair about 7 years ago so I guess I’ll have to get that stuff again for the future. Fun times. Got to stay positive

[Linda Muhammad]

Third and worst fall happened three days ago. Lost my balance going upstairs and broke three bones in my ankle in my “good” leg. I was having daily weakness in my other leg. Positive (because I try to stay in that lane), my weak leg has had to get together and not be so weak. The things our bodies to endure this disorder.

[Wayne Eisen]

Hi Folks,

I can’t over-emphasize this…

Load up on collagen!

Cleveland Clinic says “Collagen accounts for 30% of your body’s protein. It provides structure, support or strength to your skin, muscles, bones and connective tissues.”

I’ve taken a lot of prednisone for my MG, which weakens bone density. And because I put a lot of pure, powdered collagen in my smoothies, my bone density has IMPROVED!

Best wishes! Wayne

[Bli shame]

I have fallen several times, and each time it is because I ignored the warning signs of muscle fatigue. I could feel my thighs and legs, weakening, and still I went ahead and did something which led me to fall when I should have stopped and taken a mastodon. we simply have to learn the early warning that my Uzi is giving us and correct for it

[Ant Katz]

I’ve been living with MG for many years and always had problems (and falls) from the very beginning, but only on uneven ground. Over the past six months I’ve contracted a rarer neurological disease, CIDP. In terms of mobility and falling, this is a whole new ball game. I’ve spent the best part of the past sixteen weeks requiring a wheelchair to move.

The disease is all about falling (often fainting) due to a drop in blood pressure when I stand up.

Two weeks ago I had a brutally expensive treatment called Polygam (which is often used to medicate MG as well).

As I write I am waiting to see my neuro as my BP has continued to go down, both at rest and standing.

Nobody knows the feeling except fellow-snowflakes. Neuros understand the science but not our experiences. They will often pooh-pooh us when we tell them our symptoms.