no idea leg pains could lead to ALS forum

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yukoner

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i'm a 52 yr old female. in the past 6 months i'm wakened every nite... sometimes 3 or 4 times with horrible, horrible shin pains & leg cramps. the last month it's worse... far worse. i am wakened from a deep sleep with such excruiating pain that i have to try to get out of bed to stand. when i do... both... BOTH feet are drawn upwards towards my shins. i've tried everything to release it. my husband gets up and puts cold packs... we try hot packs... i get in a hot bath. it's futile. i am screaming with pain. one nite it lasted 40 minutes.
i'm exhausted when they finally let loose and my mouth is parched. there have been 2 occasions where i've passed out. not completely but the pain is so bad that i feel as if i should die if it were to last one more second.
my doctor told me to drink tonic water. i do... i drink bottles and bottles of it. everyday.
i go to bed in fear of being wakened with this pain!
i am currently in a camp in the bush of Yukon Territory for 3 weeks. i'm loving every minute of the daytime... but dread bedtime because i'm terrified of this happening. there is only a shower here... no tub. i have no idea what i will do if it happens here!
my husband isn't even with me to help me through it.
i googled the symptom... and it led me to this ALS forum.
one of my good friends passed away from ALS a year ago. i used to live in a small Nova Scotia town where there is an unexplained high occurance of ALS. is this truly a tell tale symptom?
i also have hand spasms... where my fingers draw up but it's easier to massage them back into place.
and... i am exhausted all the time. i have been for 4 or 5 months but blamed it on menopause.
anyone have anything to tell me?
 

Blackpool

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I can't answer your questions,but just wanted to let you know I read your post and you are probably scared. I have only been diagnosed for one month,but by being on this forum feel sure you willl get a reply from one of the many learned members of the forum.I do know one thing they will say, it could be one of many things it dosn't have to be ALS, you should go and see your Dr and have him refer you to a Neuro specalist.Try and enjoy beautiful Alaska. Peace be with you.
 

Zaphoon

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Yukoner,

The violent kind of cramps you describe don't seem typical of ALS. I have a ddiagnosed of PLS and my legs cramp all of the time but not so bad as to wake me from deep sleep.

Your best bet is to get a referral to a neurologist if you fear you may have ALS.

Leg and hand cramping can be caused by a large number of things other than ALS.

Zaphoon
 

yukoner

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thank you for replying. i wasn't expecting a diagnosis on here, obvioulsy... however i guess i just needed to hear that someone else has experience this sympton. not that i would want anyone else to have to bear this. it's just horrendous. it's now nite time in camp and i am dreading going to sleep for fear i will awaken with this crippling pain.
i took 1/2 a muscle relaxer the first few nites i was here so i could get some sleep. i actually didn't have the pain.
here we go tonite without one.
my dr.'s office will be the first place i head to when i get out of camp.
 

yukoner

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by the way... Blackpool: Yukon Territory is in Canada... we're neighbouring Alaska... they are both amazing places!
 

Blackpool

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Yukoner, I have had a few friends go to whitehorse working but the friends that have been to Alaska have been very impressed.You are right they are both amazing places. I hope you have a good nights sleep.
 

wheeler641

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I too suffer from horrible leg cramps at night, It has been happenning for about 5 years now on and off. They are slso mostly in my shins and it just horrible when you get it in both legs at one time, the pain is tremendous I do not have als, lots of other thing, but no als. Have you had your magnesium and potassium level checked? Are you on any medication that could deplete any of these levels. My magnesium level was low and since I started taking supplements they do not happen as often. Also have you been checked for diabetes this too can cause severe leg cramps as it can throw off you electrolyte balance. I am going to say something that helps me even though it may seem crazy, after I get and can hardly walk due to the intense pain, I will put a little salt on my hand and lick it off and for some reason the cramping stops. My husband who was a constuction worker and worked out in sweltering weather told me to try that and it works for me, not sure why, But you probably should get to a doctor to have some blood work done to rule out some of the conditions I mentioned. My leg cramps sometime go away for months at a time and them return with a vengeance, I agree it is just horrible. I am sleeping peacefully and then I stretch a little and I get a cramp in one leg and than bamm the other one, it just exhausts you the next day, hope this helps, margaret
 

BethU

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Yukoner, I have had the same cramps you describe, and I agree, they are the worst pain I've ever felt except for toothache, where the nerve is exposed. Mine were not as bad as yours, however. I was able to stop them. I experienced them a year or so ago for a dozen times and not since.

Although I have ALS, I don't think these are related to ALS. I have had a score of strange symptoms ... including seizures in the middle of the night that woke me up ... that occured a few times over a couple months and then disappeared.

When I awoke with my foot pulling back to the shin, I was able to force it down with the other foot. Sometimes that would do it, sometimes, the pulling would then reverse to my foot pulling back to my calf. Once it happened with both feet, and I jumped out of bed as you do, and standing on the floor would relieve it. It also happened with my foot twisting to the side, and it happened when I was driving, too ... which really worried me! If my right foot started pulling back or pushing down on the accelerator, it would have been a catastrophe. I haven't driven on a freeway since the first time it happened when I was awake, and now I have stopped driving altogether.

Usually I don't post oddball symptoms because I don't want to worry people without ALS. I have never heard this mentioned by anyone else with ALS, and as I say, I have had such a bunch of strange things happen ... including hallucinations, bouts of euphoria, the seizures I mentioned, this foot pulling thing ... which have nothing to do with ALS, that I hate to mention them. Clearly there is something going on with me in addition to ALS.

I hope your doctor finds a solution. And I hope mine never come back! As you say, it is an unbearable pain.

Again, I don't think it is ALS related.
 

olly

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hi beth.
the problems you have with your feet are definatly umn/spasms as i get them.
my feet can also twist and just the other night in bed my foot was in the down position but suddenly snapped up towards the shin.
for some weeks i have had ankle spasms at night in bed mainly,my ankles painfully feel like they are wanting to twist or are being twisted by a unseen force.
these are normal symptoms in mnd land:roll:
 

BethU

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Caroline, thanks! I always think I must be the first person to have ever experienced these strange symptoms, and I do get confused among spasms and cramps and charley horses.
 

thelma313

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Beth, my Dad also complained of severe leg cramps and charley horses. For a period he got them every night but then it stopped. You're not the only one.

That said, my Dad's leg cramps only started some time after he was diagnosed and after almost a full year of experiencing other ALS-related symptoms inlcuding foot drop and slurred speech. I am no doctor but it seems that the leg cramps and charley horses on their own don't point to ALS. Nevertheless, your best bet, Yukoner, is to see a neurologist.
 

crystalkk

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yonker,

Sorry about your pain, has your dr ran tests.... It could be soooooo many different things, potassium, magneisium, your thyroid , your parathyroid, lyme disease and its co-infections, west nile. Just to name a few.
Enjoy your camping trip and get to the dr when you get back. It doesn't seem like you have any other symptoms of MND that google just brought you here to scare you.
 

melg

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I have had leg cramps going back 20 plus years. The pain can be oh so excruciating. Only one who has had them can know how bad it can be. I tried many remedies but nothing helped until my doctor suggested Quinine Sulfate. It did work but I was taking them every night. Along with Isulin and more than you want to know. Then I found out that the long term consequences for Quinine is not good so I took less and less. One night I woke with a bad one and I don't know why but instead of stiffening to fight it I just relaxed and thought "Oh you just do your thing". It just faded away so fast that it left no residue of pain. I couldn't wait for the next one to defeat. It went on like that for months without a miss. Then I lost it. I couldn't do it any more. Alas. Until a month or so later I managed it again. I fear them no longer because I can easily beat it and it takes no longer than it takes to come on. I'm not special. Just an old fart of 83 retired. If I can do it, you can. You have to be quick and stop fighting it instantly. Think "RELAX", let it go, play dead " and it will just fade away. You will feel so elated. Overcome that renagade muscle. And tell all your doctors to go to hell. Well, not really. IF I CAN DO IT YOU CAN.
 

Blackpool

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I will give it a try the next time I get a cramp. Thank you for the suggestion.
 

Naeco

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Sorry to hear about your symptoms. I get those leg cramps in my sleep as well. When it happens to me, my foot (toes) points straight down like they describe in foot drop except the pain is excruciating in my calf and the arch in my foot. If yours happens the same way, you can usually just lean against the wall and push your heel down against the floor. Sometimes it takes a while for the muscle to release and let you heel down but once it does it usually goes away completely after staying in that position for a minute or two.

When I notice them happening more often it usually helps to eat lots of banana's (for the potassium) and stay away from apples (they cause muscle cramps). I was a competitive swimmer in high school and just following those two nutritional rules seemed to help a great deal. Getting those cramps in the swimming pool was terrible.

Hope you feel better soon! Take care

John
 
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