Worried I have symptoms of ALS. Grandmother also had motor neurone disease. Advice/support please x

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Lucyb

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Hi. Thank you for accepting me into this forum, it is very much appreciated. I have been increasingly worried about my symptoms over the last few weeks. I have a diagnosis of chiari malformation type 1, however my symptoms do not match chiari malformation. My maternal grandmother had motor neurone disease disease at 68 and passed when she was 71, so I know this increases my risk of ALS.

I am a 26 years female. My symptoms are muscle twitching in my arms, leg (right calf), thighs, tops of foot, tops of arms and my back. I’ve had muscle twitching since around August 2018. I also suffer from a lump type feeling in my throat which begun around late 2018 also. However more so recently I have an increased tightness in my throat constantly that does not ease, lump/mucus feeling in my throat that will not clear and it feels that I am slurring my words that no one else around me can hear but I can hear it myself.

My thighs have become thinner over time and my calf muscle in my right leg is smaller than my left and the muscle is very soft, the calf actually looks a different shape to my left calf. I have tingling in the muscle constantly and just a horrible feeling in general in the muscle. I have left side shoulder pain and a dent in my deltoid muscle which I haven’t had before, I also have weight loss and lack of appetite. I get tingling in my arms also. I also have what feels like my right foot and right hand feels disconnected from my body but I can still use the both of them.

I had an EMG in my left leg, calf and thigh muscle in February 2020 and a nerve conduction study on my right side body (arm, wrist, ankle and leg) and the results were normal. Would this be enough to rule out ALS and does it sound like I am describing would could be ALS? I would appreciate any response I can get, I am very worried unfortunately.
 
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affected

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Hi Lucy,
This is the best place to start, and you need to read it through twice as there is so much information in here.

That's our carefully constructed official opinion and it really answers everything you are asking.

I'm pleased to sum it up by saying - you don't have a single ALS symptom, nope not even one. Time to go back to your doctors.

I'm very sorry about your grandmother, but truly your chances of getting ALS from her at only 26 are also zero (or such a tiny number we can round it up to zero anyway). If you mum develops ALS as she ages, then when you are getting old you might. If your mum is fine you are back to zero chances of it being in the family.
 

Nikki J

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You sre not describing ALS and you had a normal emg. You are good.

re your gm. Your mother has a very very slight increased risk as the child of a SALS patient. That is because we think SALS people have a combination of genetic factors that if given a series of triggers manifests as ALS. your mother might have inherited some of that. The risk is diluted again in you to be infinestimal
 

Lucyb

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Thank you so much for your time in replying to my post. Am I at increased risk because my maternal grandmother had it? Is the fact she was older (68) suggesting it was more sporadic than familial? The only thing I do know is my great grandmother had dementia and passed when she was 84.

can I also ask, the fact I had an EMG done in my left leg (unaffected leg) in February, in my calf and thigh muscle which was normal able to rule ALS out? Although things seems worse now, my thighs are now a lot thinner and my right calf is a lot smaller and soft in the calf muscle? It also feels like my right foot is stiff and not connected to my body, I worry to walk on it incase I get up and it doesn’t work, this also happens to my right hand. I also get twitching in my left shoulder, shoulder pain and what looks like muscle wasting in my left deltoid muscle, with winging shoulder blade.
May I mention that the tightness in my throat is constant, I wake up with it and go to sleep with it daily now which is new in the last few weeks, it feels like my tongue does not work correctly but no one else can hear what I hear when I talk (i think I have slow speech) I also have a very hoarse voice.

I’m sorry to ramble and I really appreciate your response.
 

lgelb

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Nikki already answered your question. Unless your mom has it, you wouldn't possibly inherit it.

Your account and normal EMG signify nothing to worry about as regards ALS. I encourage you to return to your primary care physician, whoever's treating the Chiari, and/or consider counseling to address this anxiety about your health.

Best,
Laurie
 

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I even answered the question before Nikki kindly did, so now you have had 3 of the most senior members here tell you the same thing. You are good to go. Please see your doctor for your concerns.
 

Lucyb

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Thank you to everyone who responded on my post. Firstly I would like to ask, the EMG I had done in February was only done on my left leg in my calf and thigh muscle (this is my unaffected leg) if there was ALS, would something have still been picked up even though the EMG wasn’t done in my affected right leg, arms and torso? May I add the NCS was normal


secondly since February my symptoms have got worse, I am having a second EMG tomorrow which the neurologist has requested. May I add I am absolutely terrified for the results.

my thighs are now appearing thinner and have done over some time, my right leg thigh and calf muscle is a lot thinner and smaller than my left leg. My right foot feels odd constantly, it’s feels like it doesn’t work properly and isn’t connected to my leg, it feels heavy and I also get a lot of discomfort in my calf muscle and foot, feels like tingling, tightening and cramping, like a squeezing feeling. I am worried I have muscle wasting in my legs, especially my right leg

I am now waking up recently with a feeling of pins and needles in my leg hand and arm which is the side I am getting shoulder pain, arm pain and twitching in the arm, it also appears that my deltoid muscle is wasting. I also have a feeling like my throat is extremely tight constantly and it feels as though I can’t swallow the mucus that feels is in my throat, and once it clears it comes back or I just have a constant tightness in my throat.
I also have weight loss may I add.

I’ve rambled here and I’m sorry, I would appreciate any reply I can get, I would be most grateful.
thank you.
 

Lucyb

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Sorry I forgot to add, does this look like muscle wasting? My right leg appears to be visibly thinner and smaller than my left leg which I’ve never noticed before until a few weeks ago. The right calf muscle is where I am getting a lot of discomfort, twitching and jerking in the right leg and foot.

I don’t mean to be a pest but I am so worried with what I may be dealing with.

May I add I can still stand on tip toes and my heels although it causes discomfort in the muscle but i can still do it. I can also stand on one leg, both sides and balance. Appreciate any response given x
 

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Nikki J

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I can’t tell by pictures. Atrophy in ALS usually follows failure by a significant time frame. IF you do have atrophy without failure that points to something else
 

Lucyb

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So by looking at those pictures you would say I don’t have muscle masting?
What would be classed as ‘failure’ please could you give me some examples so I have a better understanding of what the term means when you use it.
By any chance, did you see my precious message the one I posted before the pictures please? I have another EMG tomorrow and I’m truly terrified. My grand had MND and passed when she was 71, so I am terrified I am displaying the same pattern as her. I had an EMG in one left (left) thigh and calf muscle test in February which was normal, but I didn’t have the symptoms I do now back then and I’m worried it hasn’t picked something up. Would it have shown something? It was completely normal along with the NCS.

i would be grateful for your response x
 

Bestfriends14

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Tomorrow is not long away at all. I am sorry that your gran died from ALS, but that has no baring on if you will get this disease. As for what failure is, it is the very thing you are still able to do-stand on your toes. If you truly had atrophy from ALS, first you would have an inability to stand on your toes. Then the next thing that would follow would be foot drop and a foot slap type of walk. THEN you would get atrophy. You do not get atrophy from having no failure. Again, tomorrow is not far away. Please let us know how things go. I am more than confident you will be cleared of ALS.
 

Lucyb

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Thank you so much for your response.

I am dreading tomorrow and what it may bring. I can stand on my toes and my heels but when I do stand on my leg, it feels like tm leg is very heavy, dead, just generally not right and foot feels strange like it’s stiff and heavy and not connected and doesn’t do what I want it to do, but I can walk on it. It feels like I can’t put my weight on my right leg. My right calf is twitching like crazy constantly and I keep getting spasms in my right calf and thigh. My foot also tingles. My right hand feels the same as my foot too and my wrist constantly aches, it feels heavy to hold my mobile phone.

My throat is extremely tight everyday too in the last few weeks. It’s constant.

I know you said that because my gran had it it doesn’t mean I do, but it can be familial which is why I am very concerned. She was 68 and passed when she was 71.

As I said I had an EMG in February only in my left leg but I didn’t have these throat issues or the issue with my right leg at the time. If it was ALS, would something have shown in the EMG I had on my left leg in February?

Sorry to be annoying, I don’t mean too be. I appreciate everyone that responds to my messages
 

Bestfriends14

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Please stop until tomorrow. You have nothing whatsoever that says ALS. Nothing. Clearly being here has fanned the flames of anxiety, so for now, I will not answer your questions further.There simply is no point as you are not describing ALS.

Please let us know how your appointment goes. Tomorrow.
 

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Example of failure in my case -
One day, after a long walk, I tripped when climbing stairs. This happened a few more times. I didn't feel any different in any way & just became more careful on stairs. Over the next few months, I developed left foot drop & couldn't hold the fingers on my left hand together. Saw a neurologist. He asked me to stand on my heals & I was surprised that I couldn't. I still felt normal in every way. He did an EMG & sent me to see a neurologist at a nearby ALS center. After more tests, I was diagnosed with ALS.

In my experience, if you had ALS symptoms in 2018, you would surely have significant failure today - inability to do some routine things. I was diagnosed in 2011 & still don't have any tingling, tightness, strange feelings, aches or stiff & heavy feelings. But, I'm in a wheelchair & only have limited hand/arm use. That's why the folks here say ALS is about failure, not feeling.
 
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Lucyb

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Thank you so much for commenting and I’m sorry to hear of your diagnosis.

I am just very worried because of all what I feel, getting worse and my grandmothers diagnosis of MND makes me extremely worried I may have it. Thankfully my mother doesn’t show any signs of it and she’s 54 but I know my great grandmother had dementia and passed when she was around 81, so I don’t know if that has any relation to MND either.

I can still stand on my toes, heels and one my weakened leg to balance but it does hurt my calf muscle and thigh. It feels like I can’t put all my weight on it because it hurts the calf muscle and feels very discomforting.

I am also very concerned about this tightness in my throat constantly, it’s not letting up at all.

Sorry to ramble and I thank you for once again for commenting x
 
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