Could this be ALS?

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Alanahughes1994

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Firstly I want to say thank you for accepting me into this forum to gather advice and maybe some reassurance. I am 26 years old, female and my grandmother (maternal) had ALS when she was 68.

I saw a neurologist in January 2020 after receiving a diagnosis of Chiari Malformation however specialists don’t believe that it’s the cause of symptoms (I don’t either). I’ve had MRI of brain and spine which shows the CM and a loss of cervical lordosis, other then that all is normal.

For around 2 years now I have suffered from what feels like a heaviness/lifeless feeling in my arms and legs, thighs specifically when I say legs.
I have had twitching in my muscles (arms and legs) since August 2018.

I saw the neurologist in January who didn’t have any concerns, but agreed to send me for an EMG due to the muscle twitching and tingling in my legs. I had this done in Feb 2020 (one leg tested with the needle EMG, calf and thigh) results were normal.

However since around May 2020 my symptoms have got progressively worse, they appear to be getting worse daily.
My symptoms are;
A weak feeling in my legs 24/7, it feels like they are going to give out when I stand on them, my thighs also shake when standing on them and can shake even when sitting resting, they also tense up out of nowhere and shake. Twitching in my right calf and thigh and foot (my right calf appears to be a lot thinner then my left) and generally my legs have got thinner over the course of months (thighs included) but more so on my right side.
The lower part of my right leg and foot feels like it doesn’t belong to my body and feels tingling 24/7. I also suffer from tingling and pins and needles type feeling in my feet, they also feel terribly cold. My legs feel heavy and stiff when walking on them too. My calf muscles especially my right side are extremely soft, I describe them as


my right hand and wrist feels weak and stiff, but I can still use it to some extent but it feels off 24/7. I also have the occasional twitching in my hands also. I have pins and needles down the side of my right hand and into my pinky finger too, especially when sitting in certain positions.

a weakness feeling in my left shoulder - however can still raise my arm. I also have twitching in my left shoulder and left bicep 24/7, everyday.

what really concerns me is now my speech and a feeling in my tongue as though my tongue does not work properly when speaking and even when my tongue is at rest (not speaking) it doesn’t feel right in my mouth. When my tongue is at rest and I look at my tongue I can see flickers in my tongue. It feels like my tongue is shrivelling up in my mouth when resting. I also think the tone of my voice has changed, hoarse. It also feels difficult to speak and put sentences together because it’s too tiring for my tongue to do so. However no one around me has noticed.

my mind doesn’t feel right, I feel like I am trapped 24/7 and nothing around me feels real. I can’t concentrate on work, general life and have no excitement for anything because I feel so poorly.

I wake every morning and my body feels lifeless, like it doesn’t want to move and generally just very unwell. i want to sleep 24/7 because I am so fatigued and sleepy. I wake up unrefreshed every morning.

I contacted the neurologist in May 2020 and told him my concerns around my grandmother having MND and the symptoms I have experiencing, not to the extent I have explained above. It was just the issues with my leg and twitching at the time. He agreed to do another EMG, which I had done in June 2020, my right leg was tested (calf and thigh), left arm and hand, my back in 3 places (thoracic area) and under my chin. The neurophysiologist reported it as normal.

I saw the neurologist face to face in October, who done a clinical exam and reported there was no neurological deficit. Told me functional neurological disorder and suspects the twitching is benign fasiculations based on the EMG findings. I asked for a third EMG and he denied me one based on the findings of 2 EMG’s carried out this year already.

i then saw a physiotherapist private for a consultation who conducted a muscle test snd reported I have over average strength for a female. Despite me feeling weak and like my body is not functioning correctly.

I can still raise on my toes and heels.
I can still do simple tasks.
However I feel poorly every single day and like my health is getting worse and worse by the day. Now including my speech and tongue deteriorating.

my question to members on this post is, would you say these are symtpoms of MND? Have I described here MND and could this be what I am dealing with and should I seek a second opinion?

i appreciate anyone who takes the time to read this long post and replies. Thank you.
 

Nikki J

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No I would not. Why? 1 normal emgs 2 normal clinical exam ( especially no clinical weakness which is the hallmark of ALS but also apparently no upper motor neuron signs either which are necessary to diagnose ALS/ MND) 3 the description of your symptoms which are sensory ( you feel x y z) ALS is a disease where you feel fine but can not perform certain functions and these failures increase exponentially over time

to address the family history. It is very common to see people here saying my parent , grandparent or other relative had ALS and they are worried. One relative is not a familial pattern. Even if you said you had multiple relative diagnosed at 60 I would still be saying not to worry because you are so much younger. But you don’t. put MND out of your head and follow whatever advice the doctor gave.

good luck
 

Alanahughes1994

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Thank you very much for your time in reading my post and response.

when I had the first EMG in February 2020 I was not displaying any of them symptoms other than the twitching (which is worse now) and minor tingling in my legs. When I had that EMG done it was only done in my left leg, calf and thigh. At this point, could it have gone undetected due to the fact I wasn’t having the symptoms I’m having now ... and the fact it was only done in one limb?

also to address the EMG I had in June, my symptoms weren’t this bad either back then. It’s now 5 months on and my symptoms have got worse, including my speech and the feeling in my tongue (to add, tongue twitching too).

my understanding of the FALS, is your parent can be a carrier of the gene but not have it but pass it down to you, is that correct? My mother doesn’t have it but it was her mother (my gran) that did.

thank you for response once again.

I have attached what I believe to be atrophy in tm right leg for some acknowledgment. Thank you.
 

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lgelb

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Legs and arms differ between L and R. If a neurologist saw clinical atrophy, s/he would say so. Of course, you can always ask.

The EMG wasn't too early and it doesn't have to be done everywhere to be valid. The hallmark of ALS is that areas that you think are fine show up with damage on EMG, in other words, more muscles than not are abnormal.

Your two normal EMGs say that you do not have ALS. Your symptoms don't match. Your strength is normal. No one but you hears speech problems.

There are all kinds of systemic disorders that can cause pieces of what you describe. I advise you to see a good GP and start at square one. It is also worth considering that depression and anxiety, more common than ever, can trick the body into thinking that, like the mind, it's below par. If you truly want to feel better, be willing to listen and discuss the possibility of counseling.

Best,
Laurie
 
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Alanahughes1994

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Thank you for your responses. However I am very concerned my symptoms are caused by ALS and I don’t know which way to turn. The neurologist has denied me another EMG, as I’ve had 2 this year (February and June) and he says the third is not showing as clinically needed but my health is getting worse.

My speech is getting worse and the feeling in my tongue is constant. However no one around me is noticing my speech is an issue. my tongue feels pulled, tingling (sort of) and like I cannot physically talk because mt tongue doesn’t move properly, it constantly flickers too all over the tongue.

i have a constant nagging pain in my left shoulder.

My right ankle and lower leg is weak, it feels like I cannot support it when standing and walking and sitting my foot and lower leg doesn’t feel right, it’s like my feet and lower leg are not attached to my body. My feel tingle too constantly.

I’ve attached some photos for your review if you could be so kind, I would be very very grateful.
I am very concerned it’s atrophy.

the twitching in my calf, the thinner leg is also really concerning me too.

these symptoms never let up and feel like they are getting worse.

after 7 months of worsening symptoms would it be evident this is ALS?

I am very grateful for any response received. Thank you.

(mod note: photos removed, no purpose, were same as ones posted above)
 
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lgelb

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Yes, after 7 months and two normal EMGs, you can be confident that ALS is not in the picture. Atrophy can be assessed by a doctor so if yours hasn't seen any, I would be confident that you have normal asymmetry.

You have not responded to suggestions to see your GP, consider counseling, and move away from your fixation on a third EMG. So I think we have said all that we can say, and I am closing this thread.

All the best.
 
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