I get like that from time to time. I fall over like some character in a silent movie. I always think it's the end for me, then it stops.

If it's any comfort to you, I was falling over all the time two weeks ago, feel fantastic now. Great balance, striding about (as best I can).

Now that I have added Keppra to my mix of meds, my spasms are a thing of the past.

Take care jolocny, let us know how you get on.

I’ve also had my left leg go out on me lately, but luckily I’ve been in the kitchen and grabbed onto the counter or my rollator. I’m so sorry to hear of your falls. I’d also like to sit and talk with those that don’t think we have symptoms. I’m reading of some men doing a lot more than some of us ladies can do. Keep your chin up jolocny and prayers are going up.

Jolocny, I feel for you and you're right: Some women have very pronounced symptoms of AMN and you need all the support available. We're here for you. I often have a knee collapse and fall. It really weighs on you mentally. It really sucks. My only suggestion would be to work with a neurologic physical therapist, not a physical therapist. I have incorporated into my own fitness routine what I've learned. And stretch. Work on that in therapy. This has been a saving grace. You need to strengthen your core to help you with the weakness. You are in my thoughts. Stay positive and strong. And vent here. We listen.

Hi Joann

Good that you got straight on here to get our thoughts. Yes, we are all here to support and I hope to reassure you.

I think I have had this sudden collapse a few times in the past. I was wondering what anti-spasmodic meds you may be taking? As I have written here before, the medical view is that they can work, but the side effect I also often to make the muscles less strong or even floppy. Could that be worth thinking about? I know that in my case, I have a lot of stiffness which I am sort of resigned to, but the plus is that the muscles seem to hold me up, even though, of course, they can tire easily.

Don't despair, I suspect that this may be a temporary blip. Keep moving as always. And yes, women do get affected like men.

All good wishes

Chris

Hi Joann,

I'm sorry to hear about your falls and I hope this is just a blip like people say. I am one of the women who do have symptoms, big time!

I'm in downstate NYC, in the middle of the hustle and bustle of this very energetic city! I was born and raised here, so this is home for me. I'm 55 now and, in this city, there is no rest for the weary!

I have pain. Pain wakes me in the middle of the night. Not spasms. Pain. It's now a part of my life. As long as I'm able to function in my waking hours (commuting, working, socializing - ok, I make adjustments - and working out), I don't push very much beyond this. Fatigue sets in and I fall!

I have sciatic pain which makes everything bad. Sciatic pain usually only runs down one side of your body. Most of the time, my right leg will give out and I fall. My hip flexor and lower back on my right side are too weak to stop my fall. I used to be able to rise up easily but lately I feel the nerves in my hip flexor radiating and I need a moment to stand up again.

I've been to a spine specialist at Weill Cornell a few times this year. The first treatment was a cortisone shot in my L4-L5 but this didn't do anything. Since then, I've had 2 nerve blocks in the L3-L4 and the second one seems to take. It could be because I decided to stop working out for the last 3 weeks. Of course, I can't expect overnight miracles, so I'm playing this by ear. I have a physio appointment tomorrow and if he agrees, I'll be in the gym again on Sunday.

Please let me know if you have questions!

Take care,

Julie

Hi Jolocny, sorry to hear your troubles and yes I sympathise as a woman with AMN symptoms. Have had so many falls and broken so many bones that I have to use a rollator and scooter for longer walks for my own safety. One minute I am standing then on the floor as legs won’t react in time. I do take Gabapentin for leg spasms which is a real help. I do use gymn and find bike, cross trainer and leg stretch help stretch my calves and helps. I do get terrible cramp in ankles, feet and hands.

Hope this eases for you and no more falls, take care Sue xx

Hi Jolocny, Thanks for letting us know about what's happening. You can see there are a lot of folks who identify. My knee collapsed last December -- out of the blue -- down for the count like I had been shot. I was alone. Finally got to the hospital. I have been walking with a walker ever since. I have to hang on to something every time I stand. The knee gimps out randomly perhaps once a day. I don't use any meds, but am completely devoted to my modified yoga, gym, and swimming routines to keep walking. I believe it is the only way for me to stay mobile. Please keep us posted on how you are doing. Best wishes. xx Nan

Thank you all so much! I know that I'm not the only one now! I'm in a wheelchair all the time now. In May, I made a quite idiotic move and tore the rotator cuff tendons in both shoulders. I'd just finished a year of PT during which time I walked with assistance and had strengthened my legs. After I injured my shoulders … it was all gone. I've tried to do leg raises but that's gone to the wayside. Feel like it won't help anyway.

I saw Dr. Fatemi for my annual at KKI and he said he didn't think I'd get it back and that I'd reached the pinnacle of symptoms. Well …….. I've emailed him about this.

I know that I need PT again. I'm going to call my 'PT savior' this morning and just talk about it. I know that I need upper body and core strengthening to battle this. Maybe I can get some inhome PT.

I'm just a bit defeated at the moment, I fell again this morning transferring from the toilet to my WC. Thankfully, hubby was home, but he just can't lift me. We bought an IndeeLift that has been a godsend for us.

Again, Thanks to all of you! I'd been doing so well that these times really throw me off!

JoAnn

Hey sweetheart.

Like you. I have been suffering with my whole left side later, including my leg giving way on me on more than 2 occasions. The other day day threw me though as my right leg decided ti guve out. I only take 2 amatriptaline tablets at night for my nerve pain.

My back and left hip are agony, and the pain travels down my leg. I often go to the doctors which is pointless.

Continued sleepless nights due to pain and burning sensations.

Its getting scary, so i know how you must feel.

I now have my asthma under control but my Larynx is closing. They don't know why..say it could be due to allergies. Keep referring me back to ENT and Respiratory Specialist. Fed up with it all to be honest.

Still no diagnosis from any of them. They just look at me like im stupid when i tell them about ALD.

Oh the joys. I wish you all the best of luck.

Debi