A new problem for me!: Hi all - I've been falling... - AMN EASIER

AMN EASIER
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A new problem for me!

jolocny
jolocnyVolunteer
17 Replies

Hi all - I've been falling often in the last 2 weeks. My left leg just goes out on me. Since the last fall, on Tuesday, the back of my leg was in spasm. This is all new to me. I did get myself into bed last night and the spasms seem to be gone, the muscles are pretty tired. Still can't stand worth a damn. Hubby's helping so much but he's really concerned. Up to this time I've been pretty independent and self sufficient, so this has thrown us.

I appreciate any suggestions, and any prayers, you may have. I know I've "skated through" a lot of this stuff that you've all dealt with for years. Who said that women don't have symptoms????? I'd like to sit and talk with them.

17 Replies
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monkeybus

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.

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Magnolia209

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.

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SongStream

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.

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COwithAMN
COwithAMNAdministrator

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

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jolocny
jolocnyVolunteer
in reply to COwithAMN

Thanks so much, Chris! I don’t take any meds specific to the symptoms of AMN. So, I spasm meds. The thing is that I never have any notice when I go down - up one, down the next. I’ve been lucky enough in the past to get a little jolt before my leg goes. Occasionally not!

Once I go down, my leg is totally numb & takes up to an hour before I have feeling again in that leg. My husband, thankfully, has been home all 3 of the last falls and knows he needs to move the leg to help me get up.

It’s so frustrating!

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julie_

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

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COwithAMN
COwithAMNAdministrator
in reply to julie_

Hi Julie

I am really sorry to hear about the pain you suffer. I have never had to endure that, but I feel I do know something about it, because a few years ago my wife suffered a lower back disc prolapse - a.k.a. a "slipped disc". The sciatic pain was so bad she could not sit in a car seat and had to lie down in the back when I drove her to a pain clinic. The health system took the view that back troubles eventually get better themselves, so little was offered. After about a year during which her life more or less was on hold, I eventually found a private surgeon. His diagnosis was that he could fix the disc problem with some simple keyhole surgery. So she had this and the next day was miraculously pain-free. All the procedure did was literally to vacuum-up the debris of the disc contents. What happens is that that when the disc ruptures, the contents spill out and puts pressure on the sciatic nerve which causes pain. This is all around L4, L5 and L6.

I mention all this just to check with you whether you have had any MRI scans, and whether part of your difficulty could possibly be due to a disc problem unrelated to AMN?

All the best

Chris

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julie_
julie_
in reply to COwithAMN

Thank you, Chris. Wow, I'm glad your wife found relief!

Yes, I now believe this is unrelated but it makes everything worse!

jolocny Please keep us updated if you find out the cause! Be well.

Best,

Julie

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SusanBr

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

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nan17

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

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jolocny
jolocnyVolunteer

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

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tieaknot
tieaknot
in reply to jolocny

Hang in there! I was also told by KKI was in a relatively fast downward spiral in function and that was 5 years ago. I gained a lot of function back and had significant improvement over 2 of those years. Then I was injured again and slid back again...but am determined to regain whatever I can. Don’t let the “prognosis” set your expectations...they don’t know squat about us women! Even the best of them. It’s all guesswork at this point.

So try not to get too discouraged. I have also been dealing with more weakness and falls, and after a slight reprieve back dealing with significant back and hip and leg pain. But life goes on. Just got another round of Botox today for my bladder (blah! But worth it).

Just gotta hang in there till they figure out how to fix us or set us all up with cyborg bodies!

And as for you all who would like to sit and talk with people who don’t believe women can have symptoms...you are much nicer than me! I want to sweep

Their feet out from under them and kick them a few times super hard before we “chat” about it. Lol sorry. I’m punchy today.

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jolocny
jolocnyVolunteer
in reply to tieaknot

Thanks tieaknot! Laughed at how you’d like to deal with our professionals!! I’m right there with you! Lol!!

I’m also determined to get back/keep what I have. Being calmer today I know that I need to have a PT/OT come to my home and evaluate my needs. I was in a strange frame of mind when I saw KKI in September. Pretty much told them that I disagreed with their prognosis.

Now I have to pull up those big girl panties and carry on!

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tieaknot
tieaknot
in reply to jolocny

Let’s prove ‘em all wrong! 😉👍🏻

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JasonHarnum

punchy knot is good. :

)

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Debi

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

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jolocny
jolocnyVolunteer
in reply to Debi

Thank you for your reply, Debi! It can be difficult to share … even though that's what this site is all about. I can't compare anything to the pain you have because I have no pain. This can be good or bad - I also don't know when I might have problems because the pain doesn't alert me. I wish there was something to help you with that! I'm past most of the cramping now but still have jerking legs when I lay down.

Do you see doctors that are familiar with ALD/AMN? I know that working with doctors is an education for them. I spend too long with each doc explaining the disease. Even the "experts" can be challenging.

Thankful that your asthma is under control. Have you had allergy testing to find possible relief? AMN is hard enough without the added troubles!

I wish you luck, too! Take good care of yourself!

JoAnn

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