This was my partners biggest problem (or one of them). Ten metres was about his limit. After that he only shuffled and his legs would be falling out from under him. It is very difficult to watch and very difficult for him as people, including nurses, etc would just tell him to lift his feet. He would always say "I can't -simple". Very few understood him, including myself. It must have been very hard for him and for yourself as people think you are not trying or get distracted easily. He would hear that all the time- to concentrate and he could do it. Completely stupid comments.

Hi
I had more difficulty walking after I had a crisis. I had a wheelchair then a walker. Now I just wobble when tired. My weakest part now is my neck. It is interesting how we are effected differently. My legs used to be weaker but are stronger now.
I do need to manage the house thing too. I need to learn how to not walk back and forth so many times from room ot room. If ya know what I mean.
Ann

Hi Susannah,
I was just beginning to have real problems with walking in the evening when I was put on medication and in the cool of last spring, I could dance with my granddaughter. In the summer walking problems returned, but mostly in the morning until I started getting up in the night to take medication. I realize now that the reason I would get so put out with people who interrupted me and wanted me to come look at something, was because walking back and forth used up the energy I needed to finish what I was doing and I often had to give it up.

There is a particular kind of genetic myasthenia which is primarily axial affecting arms and legs more than the eyes and speech and swallowing. This is the Dok-7 type. You might want to ask your doctor about congenital myasthenia. Obviously we are not newborns, but this kind of myasthenia can show at many ages and we are seronegative. That doesn't mean that our illness cannot be autoimmune, but it opens the other possibility for consideration. The MDA site has a good discussion on the different congenital myasthenias. b.

Susannah,
I have found myself deleting items from my grocery list because I forgot to pick them up the first time I went down the aisle. It's just not always worth the effort to go back to the other side of the store. That is a benefit of teenage sons, I send them after all the things I forget. It works like a charm, they have plenty of energy.
Ann, I wobble when I push it too far also. That happened to me at the bottom of Carlsbad Caverns. My hubby had to hold me all the way up and to the car so we could go back to the hotel and lie down.
Cathi

Susannah,
This disease can be so frustrating. For me, I hate the unsteady gait the most in my MG. It really limits any sudden movement for me. Although it is getting better gradually, it has been a problem for me since I can remember with MG. My walking has improved quite a bit over the last six months on cellcept. Before, I could not walk from the parking lot to my jobsite and had to get a reserved parking close to the building. Still, I am limited to how much of it I can do as my heart races and legs get heavier/tired. So frustrating for me having such an athletic soul. I am confident I will continue to get better...I have increased my activity to being on my feet quite a bit now, and have been on my feet 8hrs a day/40hrs a week, kind of back and forth and to and fro at work, with little breaks sitting down. Still maintaining an active lifestyle except major athletics. I think it is a good thing to push yourself as your treatment continues by testing yourself, doing a little more if you can. Setting goals are important....Baby steps.

How have I coped? Positive thinking! Believing I can do it and knowing how I am supposed to move/walk etc. I get concerned at times, but I won't get better unless I try. How else would I know if I am better?

BTW- Mestinon is not a treatment for the condition, but it certainly can help with the symptoms. Without the mestinon, you will likely continue to struggle, and could progress to get worse. Be careful, as treatment may be necessary to push this disease back.

Best wishes going forward,

TJ

Susannah,

Two additions on coping.

One is a canvass bag I used to use for tools, it came from Target if you're in the US and was $12 in the craft section. I keep meds, Kindle, phone, glasses and the many other small objects that I used to leave behind organized in its many pockets. The idea is I only have one large object to keep track of and take from room to room.

The other thing is swallowing my pride and keeping a selection of walking aids available. Like I keep a cane hand in the house, and a cane and a rollator in the back of my Jeep, and I often used those electric carts in the supermarket when I know my walking is dicey - as it is today. I don't mean to minimize the impact of looking odd or pathetic or whatever might be my worry. But it beats getting stranded, falling, or sitting at home.

Hang in there!

Marty

The difficulty walking can be so frustrating! I sometimes drag my feet, and other times have uncoordinated movement that my daughter says makes me look like I am walking a bit like a penguin. Mestinon helps, but when the energy is gone... it's gone. I try to get most of my chores done in the morning, and also try to pay attention to my body and not sweat it if I am to tired to do something. If I ignore my body, I pay more the following day and have less active time to use.

Thank you for your comments. It so helpful just knowing there are others waddling around like me. The unpredictability is one of the most frustrating things for me. I never know how well I'll be walking when I wake up. I really need to try taking mestinon in the early morning before I wake up, I think that might help a lot.

bweeds - Maybe that's why I feel so annoyed sometimes when my kids call me to come do something that requires walking across the house. I will ask my doc about CMS and do a little reasearch, thanks.

cgreen - I too have an athletic soul and I miss a lot of things, but I try to stay positive. I am grateful for Mestinon as it is the only medical treatment I currently have. I sometimes worry how much further this disease will progress, undiagnosed, without additional treatments.

Cathi - I used to go crazy walking back and forth across the grocery store, but there's an app for that. I use "groceriq" on my iphone and love it. It automatically assigns grocery items to an isle and then I can tell it how to arrange the isles for different stores. I make one circuit through the store and don't usually need to double back. Unfortunately lately I'm not even up for that. I send our 18 year old semi-adopted son to do the grocery shopping, he is such a help.

Marty - Great idea about carrying the essentials around. I think I should set up a few diaper changing stations throughout the house as well.

Thanks for all of your support.

Susannah

Susannah,

Again, mestinon won't do anything for your underlying condition of MG. Mestinon treatswon't the symptomsdiscussion only. You would need treatment to push your mg back and to keep it back and controlled. We all want remission, but on mestinoneveryone only, that may never happen unless your MG retreats on its own. I have heard stories of over six years on mestinon only of MG retreating. We have people here that have been on mestinon over 20six yrs and mg has slowly progressed, but not remissed.

I wish you the best, just watch those symptoms. You don't want to get worse, but your MG might have other ideas.

Safe...

These damn smart phones are frustrating when typing.

Ugghh

I understand that mestinon is just treating the symptoms, but until I get a diagnosis, I'm afraid that's all I have to work with. I would love to be able to move forward with treatment and hopefully remission. That is of course assuming I actually have MG, I'm still not 100% convinced, but it is definitely the most likely candidate.

For about a year (Off and on) I had times when I thought I had gotten in the habit of walking like I was big and pregnant! (That was why I thought I was using my hands and arms to push myself up out of a chair too).
I often find myself "skiing" around (sometimes I wear two "skis" sometimes one)
I have several gaits... but none of them as "Hot" as I used to have (yet)!

I love the way so many of us can relate to this issue in grocery stores... a great but necessary adventure at times!
I can recall one particular grocery store trip where I was pushing my cart thinking to myself "I know my body is attempting to impersonate a character from the Wizard of Oz... but I wish it would decide if it's going to be doing the Tin Man OR the Scarecrow!"

Love, Becca

This morning I was doing saturday chores with the kids "skiing" around the house, it made me laugh! When my toddler was just learning to walk I noticed her imitating what we call my gimpy walk, not good.

I too thought some of my mobility issues were hanging on from being big and pregnant. When I'm pregnant I find it hard to roll over in bed, but then a while after my last baby was born I noticed I still felt like a "beached whale" when I tried to roll over in bed!

For many years, I have had to almost sit up to roll over in bed. Then the myasthenia got worse and I hardly moved at all during the night. Not a matter of not remembering, since turning over took full wakefulness! :-). b.

Susannah,

I'm sorry,
I can only imagine having no diagnosis for long, and what it may feel like for anyone in your position. I am seropositive, and I went through some time without a diagnosis and had to diagnose myself. I sometimes wonder what could've happened with me if not tested and my condition had I not gotten treatment when I did. Please forgive me for my concern, as I only wish you the best....

TJ