What did it feel like when you started to have difficulty walking?

[Kokomo26]

Every once in a while I get both pain and numbness in my foot and leg. I go to bed thinking, "Is this the beginning of foot drop? Will I wake up and I can't walk?"

I know MS is different for everyone, but if you're willing to share, what was the feeling like when you started having difficulty walking? Did it happen suddenly? Or slowly progress? Was it painful? Or did it just feel numb?

Thank you for sharing your experiences. I know it's different for everyone, but there are so many unknowns with MS...all I know is from shared experiences.

[6092177588]

I am not sure but I have it also. My understanding is the pain is not the foot but the interruption of signals and the destroyed mylin over time and where lesions are. Take care. Pat

[Royjr]

Excellent question, I know you’ll get plenty of replies. With me it was not so much pain but the gradual weakness of my hip flexors which makes lifting my knee a chore.

[ssdw1958]

With me I started to Trag my foot then a few years went by and I started to have the numbness on the sole's of my feet. Like it was said everyone is different. But in the beginning I did have the sensation below my knees as if things were crawling up my legs but thank God that didn't last long.

My son was in the first grade when I was diagnosed and this is how I told him what was going on.we had an electronical light out let that the light would flicker because it wouldn't say in, I said that's how mommies legs were working. You know he got it an asked, why couldn't they fix it mommy and put them back together, I said to him I don't know. It would be nice if it could work that way. We have since fixed that outlet.

I have one thing to say if you do start having foot drop please be careful not to fall, but remember everyone with MS is not the same.

[goatgal]

Kokomo26 As you write, MS is different for everyone. Some context, since for me, age may be involved: I was diagnosed at age 70 in 2010. Before diagnosis, I began noticing numbness on the inside toe of both feet. It has now spread across to the fourth toe on each foot. My feet are now stiff in the morning; I massage them to help them become flexible. I cannot remember a time when I haven't tripped and fallen because this has happened since girlhood when I always had skinned knees. Now, I trip and fall less because I am very aware of the danger of uneven surfaces, level changes, obstacles. About two decades ago, flat shoes and my few pairs of heels began falling off my feet when I walked, so I began wearing fisherman sandals and lace shoes exclusively. (A note to Skechers: my stiff feet won't flex enough to slide into those doggone bungee cord lace ups. Please continue with your lace up lines!) Now I know the reason for shoes that slipped off my feet: foot drop. Mine is not as severe as it is for others, but I do walk toes down. My walking speed is noticeably slower when I am on firm surfaces. At times I feel as if I am walking like Frankenstein (I.e.sort of plodding), at others (especially on hard surfaces) I hear my feet dragging (OMG! the dreaded old age shuffle). PTs have given me several exercises to help with balance and walking. I am pretty consistent in doing them because I want to live independently for as long as I may. My walking does affect my life. I avoid crowded places and situations where others are hurrying because I know I am moving more slowly and less adroitly than they. This means airports, fairs, concerts etc are very difficult for me venturing out solo (wouldn't it be nice to have a burly fellow to block for me!) On the rare occasions when I have been with them, my family hasn't seemed to notice that I lag behind; at first I though they were running away from me. Now I know it's me, tag along too loo, walking more slowly than everyone else. But on a more positive note: I am upright, on my own two feet, more or less steady, and walking at a point in time when others, even those without MS, may be using canes, walkers, or wheelchairs. I may transition to these assistances, but so far I haven't. I know this is lengthy, for which I apologize, but (the value of an anonymous forum), no one else has ever asked and here you can skip my response and I am saved the pain of being interrupted as I try to explain myself or the expression of annoyance on the face of a family member or doctor. Thank you for asking. Thank you to everyone who makes this forum a safe place to share.

[Kokomo26]

Thanks for sharing your personal experiences! Not knowing any better, I've been scared that I might lose my ability to walk overnight! While I don't take anything for granted these days, it's comforting to hear that it's been a gradual progression for most. (Geez! ....so weird to say that gradual progression is comforting! MS sure warps one's perspective!)

At this time, I only have challenges walking under certain conditions: 1) If I've been still for a while, like after a long drive or getting up after watching a movie at the theatre, my hips and legs get so stiff! It takes me several stumbling steps to get started. 2) After I've walked longer distances, especially in the heat! I get what I call 'wonky leg' where usually my right leg starts to go numb from the back of my knee down and I seem to walk with extreme pigeon toe. And 3) if I'm feeling run down or fighting a cold, my MS symptoms seem to really kick in and I'll get pain and numbness in my legs. Also, by the end of the day, when I lay down for bed, I find my legs and hips ache and I tend to fidget to get comfortable...is this what people call 'restless leg'? I'm not sure.

Thank you all again for sharing your experiences! I'm now in my 4th year since I was diagnosed and am gaining greater understanding of how to live with MS.

[Diva1976]

Weakness, heaviness, numbness, stiffness and shooting pain. Drop foot kicks in if I walk maybe 3 aisles in a store. I would find myself tripping over myself. My rollator is my best friend. Without it, I walk like a true drunk! And I walk real slow!

[ssdw1958 in reply to Diva1976]

Oh yes walking slow is the way to go because you know if you walk to fast there is a chance of tripping and you don’t want that.

You asked if I had pain in my legs I did but I have had the pain constantly and my knees have hurt a lot of years. My soles of my feet hurt soon after I was diagnosed. Now that didn’t help me with my walking and really didn’t help me with the foot drop. When you can’t feel your the soles of your feet it’s easier to trip and fall.

Be careful when you walk.