[Living]

I’ve been having some balance issues also, just seeming to step wrong. I’m 77 years old though and this is a relatively new symptom so it may be aging rather than MG. Over the years I have had a few scary episodes of vertigo though which of course causes huge balance issues and I have wondered if MG could play a part in that. No vertigo now for a couple of years and I think my doctors just assumed it was a middle ear issue. Whether major, like vertigo attacks, or minor it is concerning and I hope you’ll be able to get a good answer.

[Joe]

I am seronegative and I am on ivig octagam.i also have balance issues.feel like I’m walking on a boat all the time.it never goes away.i take meclizine when it bad and seems to help a lot.

[Larry Boggs]

I have balance issues mostly when I bend over I seem to want to continue forward though I have never actually done so. I am a veteran and my VA doctor prescribed 15 sessions of balance therapy because I had fallen once and because of my MG. My first session was a balance evaluation based on a prescribed criteria. The results were I preformed better than individuals ten years younger (I am 79). We did two more sessions were I did balance exercises. My conclusion and that of the therapist was I didn’t need any more.

[Kent Estes]

I have balance issues as well. Mostly when standing from a siting position. Humor helps …. my brother and I were at a restaurant and, in between courses I got up to go to the restroom. Of course I was unsteady on my feet for the first few steps. The diners next to us asked my brother if I was drunk. He replied that I was a little impaired and I was his ride home! Levity helps every difficult moment.

[Dawn R]

Definitely an issue! I agree that humor helps a lot!!

[Winston D Roden]

Hello Friends:

Yes definitely. I was diagnosed in Feb. 2019 and have had vertigo and unsteadiness ever since. My DIL says I look like a little ole drunk man walking! I have blamed it on the medicine I have been on but I am not sure that is everything. I also have COPD and Interstitial Lung Disease and use a nebulizer and flutter valve four times a day for the medicine and to exercise my lungs. It only takes 10 minutes or so the get the medicine in my system but I continue with exercise for about 30. I developed these problems with my lings after the neurologist decided to take me off IVIG and try Ultomiris. The most common side effects of Ultomiris are upper Respiratory Tract Infections. I have been susceptible to respiratory tract infections all my life and then I smoked as a young person. I was admitted to the hospital with severe lung failure about September 2023 and diagnosed with COPD and Interstitial Lung Disease, both of which the doctors said had no cure. My treatments leave me very unsteady, but I am trying to strengthen myself.

[David S]

Hi all –

Have been having the same issues starting in 2017. I was diagnosed in 2019.

While walking in a crowd I must hold onto my wife’s elbow so I can continue to move through the crowd. I quite often get a bit disoriented and act like a really really old man. I am going on 74.

I have come to refer to this state for me as “Walking through life in real time in slow motion.” I have a big problem with crowds in general as they are very disorienting for me either walking through them or in other crowded areas.

My eyes seem to get overloaded and start acting funny. I then start to stutter and then my hands start to shake. At that time I know I must get away from that environment and find a quiet space.

I only have so much energy to spend at a time and when my energy gets tapped, the above symptoms raise their ugly heads. My eyes can only accept so much input at a given time….

Just my take –

Scott

[Sally W Hardter]

I’ve had balance issues since diagnosed in 2013. Some times worse then others. I retired two years ago but often would stumble and fall at work much to the chagrin of my workmates. I often think it’s connected to my vision problems with a feeling of dizziness when making quick turns or getting up after being seated for a time. I have learned to slow down when making positional changes but as usual, not much we can do about it

[Living]

When I responded to this forum earlier I was still wondering if my own balance issues could be due to MG. After reading the other responses that have been posted I am certain that balance issues can be caused by MG – and perhaps aggravated by aging. Good to know.

[miche]

I have fairly good balance because I do the leg press at the gym 3/4 times a week, I tried to push my weight, 110lbs. It keeps me from falling, best machine in the gym. If you sit properly, it doesn’t harm the knees and strenghten my thighs.

[Cheri]

Hey there! I do suffer from balance issues as well. I often tell my husband it is so bad sometimes I feel like if I were ever pulled over by the police I would miserably fail the coordination test- I’d get arrested for dui even though I don’t drink 😒

[Sharon Haw]

Yup – lots of issues. My main issue is that my feet don’t lift evenly when I walk and my toes lag and catch on uneven surfaces, steps, parking curbs, etc. That throws me off balance. I avoid walking outdoors because of balance issues. Even on the treadmill, I have bouts of unsteadiness. My MG causes my legs and feet to tire when climbing stairs so I often have difficulty clearing the steps at the top of the stairway. Anything that requires me to lift my feet can put me off balance and at risk of a fall. I’ve fractured my ankle before and have osteoporosis so I’m high risk for breaking something if I fall.

There are things that help. My neurologist prescribed Mestinon that I self-manage as an adjunct to Cellcept when I need a boost. Every morning and the first part of every session with my personal trainer is balance exercises. I also do a dynamic warmup of my core, a Tai Chi warm up, plus I’m learning Tai Chi. I also do strength training and the standard balance exercises for seniors (calf raises, alternating reaches, stand on one leg at a time, walk forward & backward through a “ladder”, etc.). It all helps steady me and gives me the strength to recover when I do lose my balance.

[phillyken]

Hi friends. I am 68 and was diagnosed five years ago. Very fortunate to have an amazinge neurologist at the University of Pennsylvania. I do plasma pheresis (exchange) every 3 weeks and it is working great for me. I started at 6 weeks, then went to 5, now 3. In a month I am going to push it back to 4 weeks. Anyway…There are times when I am walking that I am sure people must think I am tipsy. I list to the left and some times my left foot will drop and I have a small trip. If I am rested, I have no symptoms. I have always walked fast (long legs) and remain fit. I have not fallen, but there are times when I am walking a long distance alone that I do worry about that. My husband is usually my guide when walking. I just follow his lead. I am having an MRI of the brain soon, and wonder if that will show anything. I agree that exercise helps and resting a little before I head out. Onward!

[michail]

If your take cotrimoxazol (often prescribed together with prednione), that couold provoke loss of balance. This was my case, I was not a le to take it.

[Ari Maayan]

I’m 81 years old and I was diagnosed with both ocular and gMG about 12 or 13 ago. I’m down to one functional eyelid when evening comes, sometimes earlier. I have coded 6 times with complete breathing failure. Lucky to be close to a hospital. Lately I’m experiencing pretty serious balance problems and falling. Just tore the cartilage in my right knee. It only hurts when I laugh 😆

[Phillip]

I was diagnosed with MG about 3 years ago. I went through the usual treatment regime to control the ocular symptoms. I still had arm, shoulder and leg weakness however. We went with IVIG and followed up with 3 cycles of Vyvgart. My upper body strength came back, leg weakness and numbness in my legs and feet persisted, along with balance issues. My neurologist ordered a lumbar MRI, that revealed spinal stenosis, arthritis and bulging discs. So I recently had back surgery to relieve the nerve pressure between L3 and L4, L4 and L5. I’ll be starting PT next week and hope some of the nerve damage repairs itself over the next year or so, we’ll see.

If I had it to do over again, I would have asked for an MRI early on, some of the MG symptoms are very similar to Spinal stenosis and arthritis. Even with a confirmed diagnosis of MG it would have been worth doing the MRI to confirm or rule out other problems. Best wishes

[stevesr]

I was diagnosed with GMG 2 years ago. I just turned 72 last week. Because of other injuries and issues being delt with, I am 100% under care of the VA in Minneapolis. I have balance issues all the time. Dizziness is also an issue especially when getting from a lying or sitting position to standing. I have also have severe dizziness if I turn my head sharply only to the left. I use a cane every where I go except at home. I know my floors and my walking area is not very big so if I lose my balance I can just hit a wall and keep on keeping on!! I am currently taking prednisone and cellcept. Pyridostigmine did nothing for me and IVIG did very little also. My vision is really bad but has improved greatly due to my ophthalmologist introducing a “prism” into my eyeglasses that corrects double vision. I am very surprised to see as many people that there are here in their 60’s, 70’s and older. A lot of times I feel like I am out here alone dealing with this, some military injuries and of course all of our friend……OLD AGE.

[mik]

Diagnosed with Gmg after a MG crisis in the fall of 2023. Almost 3 months in the hospital. 71 years old on prednisone and cellcept. Only problem is my balance, gait and mobility along with the muscle fatigue or weakness. The debate with my neurologist is if it’s mg or loss of muscle from the hospital stay. Balance exercises seem to help and we’re starting a new round of PT. I’m walking using a cane but it’s not a pretty picture. Lol

[Rosanna Langley]

I have both MG and MS so it’s a toss up as to which M gets the “credit”. I have balance problems especially going around corners. I usually need to place my hand on a wall or door frame to balance myself. I also have a tendency to walk fast, so that adds to the problem. I don’t dwell on my balance or tripping, when my feet don’t lift all the way up, because I don’t want to give in to the negative of these diseases. I’m blessed in all I can do.

[bear]

I’ll keep this short. I have had MG since 2020 and have balance issues, too. I also have a home gym and keep my legs strong; but, the balance issue persists. My solution or help, if-you-will, is to use a cane and/or a walking stick. I go nowhere without one or the other. (I have fallen twice without one.) The cane helps a lot on even surfaces and the walking/trek stick on uneven ground. I use a LEKI walking cane that converts to a hiking stick easily (it is a great product). I’m 77 old and life now seems to be one adjustment after another.

[Cheryl]

So reassuring to see i am not alone. When blurred vision and weakness are severe not only loss of balance but in dark can’t tell where up is. Neurologist poopooed me.

My big rescue dog is sensitive to this and pulls to steady me when walking,on good days the leash is slack,won’t move if I don’t have the cane. And yet the neuro said this wasn’t a problem.

Does anyone else have tinnitus along with loss of balance? How many are sero negative?