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Lostandalone

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Hello all......I am in a state of panic right now and hope someone can help me. To start....I am a very active person and have always been very toned and am 51 years old. I am a petite woman 5'3" and 125 pounds.

The last couple years I have noticed my thighs and calves seem loose when totally relaxed. Now there is absolutely no muscle tone and it just hangs. It has quickly deteriorated to where if I lay on my side and lift the top leg my inner thigh is all skin and hangs as well as my calf hangs flaccid. I still feel very strong so there is no perceived muscle weakness on my part.

Now this is happening in my stomach area as well as arms. I have had apparent atrophy in my forearms and they are very thin and loose muscle that is there. I don't know that I feel weakness, I just have zero muscle tone when muscles are at complete rest.

Also, I have significant twitching. I have really not taken notice of this until just recently. I may not feel the twitching but if you watch my calves and legs it is a lot of twitching or movement. I have also noticed in the past couple months that I had a twitching feeling when laying on my left side in bed. I never gave any thought to it but would move back to my right side as it was very annoying. Now that my ALS fear is here I am relating that as well. I have strong abdominal muscles low but my skin is now very loose and if I go into a plank position on the floor it all just hangs. I can't even suck it in as no muscle tone.

Does this sound like ALS? Are loose flaccid muscles on rest a sign? Has anyone else had this and to what degree?

I have also had a throat sensation the last couple of months where it feels as if something is sitting on my throat. I have been to several doctors for this prior to me associating it with possible ALS with no answers. I can swallow fine just the feeling.

Please any insight or thoughts would be much appreciated.
 

KarenNWendyn

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Welcome to menopause :evil:. The female body undergoes many changes after age 50, often pretty much as you’ve described.

Twitching in and of itself is fairly common, non-specific, and meaningless. We don't even think about ALS unless there is failure of muscle function, which you have not described.

Bottom line: you do not have ALS.
 

Lostandalone

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Karen I so appreciate your response and reaching out so quickly. So would I have a failure of muscle function before I would notice any twitching, atrophy, or flaccid muscles? My muscles are like mush and hang from my bones when in a resting state. I also want to preface and say that I am an avid person at the gym and bike 25 miles about 4 times per week.

I had a pretty bad cervical injury about 14 years ago and have followed with a pain doctor. Several years ago he took notice of my left arm being significantly smaller than my right. He did an EMG to rule out that it was a cervical nerve impingement and it was not. I thought nothing of it and moved forward. Now I am seeing these additional signs. If I had begun to have atrophy in one arm 5 years ago would it not have progressed faster if it were ALS? Now it seems as if all the other muscles I have decribed are atrophying and flaccid as well.

The twitching is the type that I don't even know is occurring unless I look at my leg most times. It is very evident and active on both legs and feet. Just like worms under my skin. And the left side twitching I am now relating as gave no thought to what this all could be.
 
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Nikki J

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Order of symptoms for me isolated to one area at a time -failure, twitching, atrophy, flaccidity
 

Lostandalone

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Thank you Nikki. When you state isolated to one are at a time can you elaborate. Do you mean like a foot, then lower leg, then upper leg before it moved to the next limb?
 

KimT

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If I were you, I'd start some strength training (start light). If your neck or arms hurt, get an MRI on your neck to see if there is nerve impingement.

I don't see ALS as even being on the table. When you get older, you need to do more to stay in shape.

In ALS, muscles waste when they can no longer work.
 

Lostandalone

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Hello Kim....I am also Kim :) I thank you for your reply. I am very active and work out on a very regular basis with weight training and avid cycling. So the working out to tone is not the issue. I have had MRI's for my neck and back and know the issues associated with those areas which aren't causing the things that I have described as there is no nerve impingement.

From what you know, do muscles waste after weakness? And then from there become flaccid? As I stated earlier I have the fasciculations in various areas of my body but mainly in my lower legs and feet as well as my torso. My feet seem stiff or sore. Just recently it is hurting my right foot if I drive for very long....say greater than 10 minutes as my foot gets very sore. Not sure if this is the beginning of being "weak" for the foot. My hands feel the same way especially my left hand. Can't hold anything for long of any significant weight such as a large Yeti with my drink.

Your thoughts are appreciated!
 

ShiftKicker

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Kim, have you been to see a doctor about your twitching? You are deep diving into some pretty particular and personal questions about singular people's symptoms. But that would not be as informative or helpful as going to see a doctor. It really is like comparing quality of coughs to see if you have a cold or lung cancer. Twitching is so common as to be nothing unless it's part of a whole constellation of other symptoms- many of which need to be assessed in person with a medical professional.
 

DetroitLakesMN

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Your symptoms could be ALS.

Early stages are easily overlooked.

Yours sounds like ALS and a lot of what you say you have going on.

I have ALS and a lot of what you are experiencing.

Getting a thorough examination and hope for the best is all you can do.
 

lgelb

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Kim, I'll agree that you don't seem to have anything to worry about in terms of ALS. As for flaccid muscles in the 50's despite exercise, that would be me. +calf twitches, foot cramps...

You say you have "no muscle tone," but obviously you have muscles, to do all that biking, etc. In ALS, as you know, those muscles just disappear. As Kim says, focused toning with weights may help. Undeniably, as we age, our routines need to change to accommodate the muscles that need more attention. But to some extent, we are all victims of genetics as well -- my mom's body is well, pretty similar to mine.

For irritated swallowing, have you tried a nasal steroid? Drip from allergies and irritants can end up in your throat. Of course, a no-sugar cough drop, throat spray and more regular liquids throughout the day are always worth trying as well.

In sum, barring new weakness/inability to do something, I would continue to get regular primary care exams, including bone density testing if you haven't, but see no need to panic. I know that's easier said than done, but I really don't think you have anything to worry about.

Best,
Laurie
 

Lostandalone

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Oh no DetroitLakesMN that is scaring me. When I went to the neurologist I wasn't even considering a NMD. I went as I was having numbness in some areas of my face and my hands (particularly my left hand) was going numb. The pinky and two fingers next to it. So he did a very brief EMG only testing four muscles in my arm/hand. Didn't even test my forearm muscle. The report says normal. I was thinking ulnar nerve entrapment given which fingers were going numb.

All this concern has come up since I saw him when thinking more about it and now the twitches that I am aware of. I know they have been there awhile just have given no thought to them.

What does all this mean? Does this still sound like ALS?
 

KarenNWendyn

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I respectfully disagree with DetroitLakes here. You’ve somehow convinced yourself you have ALS. Believe me, you don’t. If seeing a neuro and getting EMG testing would reassure you, then go for it.

Meanwhile, I wouldn’t keep strssing over this. Best of luck to you.
 

Atsugi

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Dear Lost Kim,

First, stop worrying. I'll explain.
I literally cannot tell you the very high qualifications and expertise that is behind most of the answers you'v received here. One of our newer members has opined, but his post came very close to practicing medicine without a license, and also very close to giving a firm diagnosis to someone he's never met over the internet.

Even the highly knowledgeable and experienced people who answered you wouldn't dream of diagnosing someone they haven't met, examined, and tested.

That said, I will agree with the majority here and add some more.

I know that women your age often live in a constant state of near dehydration. Some just don't have any appetite, either. My wife (a doctor who died of ALS) used to go into the hospital to treat what is called in medi-speak a LOL--Little Old Lady. My mom, too, was an LOL for a decade. The first thing you do for an LOL in the hospital, my wife said, is an IV. "Add water," she would say, "get old person back, safe and healthy." So consider your nutrition and water intake and if you're taking any pills for blood pressure that might reduce your body's moisture content.

I'm not a doc, and won't diagnose you, but I will say this: Your post talked of skinny arms, sagging skin. Sorry about that. That must suck. HOWEVER, that is not how atrophy works in ALS. Many things can cause atrophy. BUT, in ALS, when a muscle atrophies, it it because that muscle no longer is being "fed" by the nervous system and has not moved in weeks or months.

ALS is brain disease. ALS destroys some very particular specific nerves--the ones that tell your VOLUNTARY muscles to move. And it does not attack all at once--ALS tned to destroy the nerves of the hand or a foot first, and then move in more-or-less serial order moving inward and upward to destroy lots of those nerves in the brain. As a result, over months or years, an ALS patient loses the use of a hand, an arm, a foot, then both legs, etc.

After a muscle has received no orders from the nerves, it lays there, limp, flaccid, unable to be coaxed into contracting. There is no feeling of weakness, no feeling of heaviness, no exhaustion or fatigue or numbness or strangeness. It just doesn't GO.

The neuro who physically saw you, examined you, touched you, tested you, and ran an expensive test on you--he/she is a trained and experienced expert who was willing to put their reputation, license, and house payment on the line to sign a report saying "normal."

Frankly, the moment s/he saw you, the doc probably already ruled out ALS and did some testing just to assure you. These docs are really very smart.

Numbness? Twitching? Nobody is concerned about those things in ALS. Sure, there is a twitching component, but it is so common to many conditions--nornally healthy people twitch--that it is not diagnostic at all.

You wrote a lot about your symptoms. Thanks. That was excellent. Now go see a general family medical doctor and discuss which direction she wants to go. I really don't see any reason to think you're bound for the undertaker. :)
 

Lostandalone

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Mike thank you so much for your insight and time to reply to me. I know that your help is important to those like myself and those living with ALS.

This is just a recent concern of mine as I hadn't associated my concerns or symptoms to anything previously. When the doctor performed the very limited EMG, he was looking at ulnar nerve impingement due to the numbness and tingling in my hand. I had not even brought up any other concerns or symptoms to the doctor so not sure that he was even ruling out or looking for NMD. It was a very limited exam with only 4 muscles checked. My bicep, tricep, deltoid, as well as the muscle by my thumb. He never checked my forearm where I am having the atrophy. He left the room without saying a word to me to head to the hospital to make rounds. I really don't think that he performed a good test.

To your knowledge, even if the forearm was not checked, would something have shown up on the other muscles? He hasn't done a lower body EMG where I am having the constant twitching in my foot and legs. Not sure how this shows up and if a limited EMG would pick it up if it is not in the muscles that were tested.

I have not taken notice to the twitching that I have had until recently as well as the continued atrophy. Also, I have had progressive weakness in my hands and wrists which I never gave any thought to either. Never gave a lot of thought to it or associated it with anything. Sadly, this is consuming me and I am so frightened. I can't get back into another neurologist for 4 weeks so this is so hard for me right now.
 
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