Old 12-27-2018, 05:54 AM #1
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Default Really worrying symptoms for ALS

Hi

Im 48, male from the UK.

I'll keep this short. Im worried sick i have als.

Around 6 months ago i noticed knee pain when bending in both knees. Around a similar time i noticed it needed a bit more exersion to raise from a chair. It was the knee pain that hurt though when raising rather than thighs. Had an xray and knees came back normal. I can do squats on my thighs if i lean backwards and not rely on my knees so much. (Strangely my knees feel ok when my thighs are pumped which worries me that the thighs are weakened and not keeping my knees correctly in line). I can walk absolutely fine.

Around 4 months ago, i noticed my fingers cramping up at work. I work in an office and was just doing normal office things, typing, moving papers and files and noticed my fingers didnt feel as strong and i was cramping if i did repetition. Really strange as it seemed to affect both hands at same time. (right slightly more). I could grip ok, grab things, shake hands and do intricate things however, anything repetitive after about 20 seconds would cramp up. It was strange because 2 months before i had decorated 2 bedrooms with no problem then noticed this in both hands at the same time. The cramping is felt in my fingers and down my forearms. I hadnt noticed any twitching in my hands or forearms but there may have been.

Looking online has freaked me out as it went straight to als. I dont think its carpel tunnel as its in both hands at exactly the same time and i did a quick test for cts which i saw online which didnt do anything.

Ive looked at my hands. They both look exactly the same as each other.
I cant decide if my phenar muscles look normal. Its my first post but i'll try and send some pics. My back of my hand looks like an old man. I am quite thin so ive never had fat hands but im sure my finger guiders look more prominent and seem to have more loose skin than i remember on top I still have a lump of muscle between my thumb and forefinger but i cant decide if its decreasing. Both hands have exactly same amount of loose skin, prominent guiders and same amount of thenar muscle.


Ive read the sticky thread about symptoms and it stating about failing not feeling which has me confused. I can do everything but it starts to hurt after a number of seconds due to the repetition. If im vacuuming i change hands after a minute of so as i start to cramp. I do also think that i am not as strong as i was in my arms but ive not done any exercise for years and im getting older so put it down to that. Its the reetition rather than full not being able to do it.

My thighs still feel a little weak and my knees still hurt. Im wondering if my thighs are not strong enough to hold my knees in place.

A few weeks ago i got a pain in my ankle. It hurts to walk on it. I can walk but i get a pain directly below the outer ankle. Its not got worst but atill there.

I feel like my arms and legs have pins and needles all over, not numbness just feel fluttery without twitching. I dont know if this is anxiety.

After getting my xray for my knee back and before i had hand pains the gp has arranged for an mri on my thighs and knees and an emg.
This is with a rheumatologist not a neurologist.

I am so scared this is als. If i have weakness and maybe atrophy plus all the thigh problems its looking likely. I have 2 daughters, a wonderful wife and a mortgage and dont want to die.

In the 4 months since i noticed my hand and finger cramping i dont seem to have got any worse in terms of weakness but im unsure if my muscles look the same as
i didnt take any photographs before so nothing to guide.

Does this sound like als. I know i have worrying symptoms.

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Old 12-27-2018, 09:40 AM #2
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Default Re: Really worrying symptoms for ALS

A few more pics from the other hand.
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Old 12-27-2018, 10:56 AM #3
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Default Re: Really worrying symptoms for ALS

ALS presents with muscle function failure (inability to perform a task), not with pain or numbness.

I’m glad you’re seeing a rheumatologist as your symptoms sound musculoskeletal to me, rather than neuromuscular.

I can’t tell anything from your pictures.
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Old 12-27-2018, 12:14 PM #4
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Default Re: Really worrying symptoms for ALS

Thank you so much for replying Karen, I really appreciate this at a very worrying time for me.

im confused by all this. I read the sticky and was confused with that too.

I thought ALS is progressive degenerative disease? where someone loses use of their hands over a period of time? Someone with ALS may not be able to use their hands as well now as they could 6 months ago? and eventually the patient has no control of the hand?

I am weaker in my fingers, wrist and forearms. im definitely not as strong but I can still grab, pinch, hold, turn etc and everything a hand can do fine, it just cramps my muscles after 30 seconds or so and it is not as strong as it used to be.

my worry is I have a slight weakness and I believe atrophy (unsure about the other one) which I thought were red flags for ALS.



wouldn't ALS do this to me? where I can currently do all those things now but in 6 months and with further atrophy I can no longer do it?
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Old 12-27-2018, 09:29 PM #5
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Default Re: Really worrying symptoms for ALS

No. The answer to all of your questions is no. Here’s the deal, ALS is not a muscle disease, it is a disease of the motor neurons. So the nerve is damaged and the brain sends the signal to muscle to move but the nerve is damaged so the muscle never gets the signal. Atrophy in ALShappens AFTER weakness because the muscle doesn’t get any signals from the motor neurons. You are not describing g ALS. ALS weakness doesn’t feel weak after repetitions, people notice that they are unable to perform a specific task, like button a shirt. They just can’t do it, not that they feel weak while doing it. Continue to work with your docs, but put ALS out of your mind.
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Old 12-27-2018, 10:50 PM #6
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Default Re: Really worrying symptoms for ALS

Hi Tracy.

Thank you so much for taking the time to reply to me.

Is ALS the same as MND?

I do also have weakness in my hands. I noticed i struggle to lift certain weights. I couldnt get my fingers to lift some tiles the other day. Could you have a look at the picture and tell me if this looks like atrophy. I have it in both hands. The phenar used to be much bigger but has lost some of its muscle and the excess skin now makes a strange set of lines.

Have you seen this happen to a hand before? Where the skin does that after atrophy?
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Old 12-27-2018, 11:05 PM #7
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Default Re: Really worrying symptoms for ALS

Seriously, the more you post, the more you are so far from describing ALS symptoms. No, your hand isn't atrophied and you've been answered all of your inquiries with patience and knowledge. If you cannot take these answers with joy that you don't have ALS, but instead keep trying to find ways that you do, you need to look at psychological and not physical issues that you need to work through.

Again, no, you do not have ALS symtoms; be grateful.
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Old 12-27-2018, 11:13 PM #8
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Default Re: Really worrying symptoms for ALS

ALS is referred to Motor Neuron Diseases (MND) in some countries. Please do not post any more pictures of your hands. We cannot tell anything or determine atrophy from a picture. Did the doc say you had atrophy or clinical weakness? You are not describing ALS. Do not continue to post the same questions. Work with your doc and refrain from posting u til after your EMG.
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Old 12-29-2018, 11:58 AM #9
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Default Re: Really worrying symptoms for ALS

<removed quoted text>

Please accept my apologies, I really didn’t mean any offence. I am very anxious and haven’t slept for days with worry. Could I just send this post as I try and explain myself.

I was just trying to ask after reading the sub sticky EMG weakness and atrophy by halfin where he explains the muscle goes through the de-nervation and re-innervation process. I felt my hands were weak and some heavy things I could no longer lift and I also felt that with Light things that I struggled to lift them and tired easily after doing repetitive tasks they ached easily, and I was wondering if It could be that my hand muscle fibres were at that stage of the process when I had more of the denervation fibres and thus showing weakness and so When I was doing something for a few repetitions the muscles were tiring very quickly.

My thinking is as this process gets worse even the things I can do now I won’t be able to do once the de-nervation of that muscle has happened on a greater scale so I can turn the key now but once the denervation has taken over I wont have enough muscle to turn it.

That is what I was trying to ask but I don’t think I did it very well.

So with that in mind, is it possible that my weakened hands (in mid de-nervation re-innervation process) That don’t have the same strength as before and ache when I use them doing something repetitive for a small amount of time mean I could have als?

Also. If One of my thigh muscles were also at this stage of the de-nervation re-innervation process and were weakened, could it be that they were weak enough to still enable me to walk ok (using the unweakened other thigh muscles) but that one thigh muscle in question were unable to fully support my knee properly and thus give me knee pains? Or would I have problems walking first?

I noticed the knee pain around 5 months ago. Would you expect me to have problems walking if my thighs were weak enough to not support my knees 5 months ago? Would you expect my knees to have given way after that amount of time or would my ligaments have stopped that?

Finally, could I ask if it is possible that I could be getting a pain in my Achilles’ tendon and outer ankle area that could possibly be caused by als? I know als doesn’t cause pain but wondered if it was some other muscle that could be atrophied and mean the Achilles has pain.

Once again, apologies if I didn’t explain myself properly.

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Old 12-29-2018, 12:33 PM #10
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Default Re: Really worrying symptoms for ALS

The motr neurons dying are like a switch turning off. See wifi analogy in the sticky. Weakness increases as there are more motor neuron deaths affected more muscles. One fails, then an adjoining one so there are more things you can not do.

I do not believe your knee pain theory is at all valid. My first evidence of quad weakness ( which came after lower leg weakness which, as is usual came first in my leg) was it collapsing when I reached for something and put my weight on that leg. I did not and do not have knee pain associated in spite of what is now bilateral weakness

ALS does not start in multiple body areas as you described nor are your sensory symptoms characteristic

Let us know after your tests what the results are
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Old 12-29-2018, 12:41 PM #11
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Default Re: Really worrying symptoms for ALS

You talk about denervation and reinnervation as if you had it. My understanding is that you have yet to have an EMG but one is being planned, and that you will be seeing a rheumatologist.

Until you have seen the appropriate specialists and had your tests, there is no point in speculating about denervation/ reinnervation when you very likely don’t have that. Meanwhile you’re making yourself sick with worry.

Why not let the doctors do their jobs first. See a neuromuscular specialist after all the above if you’re still worried.

But if the EMG comes out clean and the specialists tell you no ALS, are you prepared to accept that?
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Old 12-29-2018, 03:13 PM #12
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Default Re: Really worrying symptoms for ALS

I'm a familiar with "Split Hand Syndrome"...

You have more muscle between your thumb and first finger than a concert
pianist.

Let that part of your concern go.
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Old 12-29-2018, 03:40 PM #13
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Default Re: Really worrying symptoms for ALS

Hi Nikki

My emg is on the 7th january. They are doing it on my thighs only.
Is that not a good place for an emg?
I will let you know what the results are. It’s the uk so I may have to wait until I see the specialist for results

Sorry one more question then I will leave you in peacei promise

Something you wrote has me thinking.
So it always goes to calf area before thighs?
And it affects either legs or arms at first but not at same time? Meaning I would be having problems in just one place at this early stage rather than all over?

Thank you so much for answering me, I’m trying to get my head around all this.

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Old 12-29-2018, 03:53 PM #14
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Default Re: Really worrying symptoms for ALS

It is not 100 percent but limb onset ALS generally starts distally ( so foot / ankle or hand).

It also starts in one area and spreads from there. In my case it started in my left ankle slowly spread in that leg, then the right leg, similarly, the left hand then arm and now right hand and beginning in the arm. This is a common pattern. I am incredibly lucky that it happened slowly And again nothing hurts

And it is perfectly appropriate to pick one symptomatic area to emg. If there is a problem with the motor neurons it will show
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