Worried about Limb ALS onset

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Foxich109

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Hello, new to the site and mainly looking for some advice/guidance. I appreciate there are people here who have actual diagnosis of ALS and i cannot express enough sympathy for all who have and pray your life is filled with as much happiness as possible. Thank you for taking time to read, I would just like some views of people who are more aware of the condition than that of my family for example who are dismisses of my worries and advise me that it is health anxiety over anything else.

I have been experiencing odd sensations in the arches of both my feet since mid Jan, almost like I could feel blood running though them, bubbling or walking with shoes and wet socks on if that makes any sense? I had Constant fasciculations in them and then also into my calf’s into Feb/March.

By the end of March I experienced basically a zapping/tingling/shock type pain in both shoulders and upper arms and shins practically on the same day, as well as ongoing fasciculations in calf’s and feet. At this time I was still running a bit and felt ‘reasonable’.

Into early April and after discovering ALS Via google (I know, bad idea) I feel so much weaker than I thought, constantly checking my body which seems symmetrical but also like I’ve lost a lot of muscle around shins, thighs, forearms and bum. I seem to have fell off a cliff in terms of capabilities. Calf’s, triceps and hamstrings in particular feel so weak and preventing me running. The fasciculations now are practically all over, in my cheek, eyelid, calf’s and feet. I sciatica type pain when I am walking, My forearms feel very achy too. It seems quite symmetrical in terms of the whole situation but also seems progressive and I am petrified.

I have had bloods/brain and spine MRI all clear. Docs think I’m anxious, which I clearly am but can’t explain fasciculations and aches. Saw a Neurologist on Saturday who’s going to do EMG but he thinks I don’t have ALS (no clinical weakness). I feel a lot weaker than I normally am but can push a 60 year old docs arms up at the moment. Does anyone have any thoughts?

I am 32 have a beautiful young family that I wish I could concentrate on but this has consumed my whole life.
Thanks for listening.
Andy.
 

affected

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Hi Andy,
sorry for what you are experiencing, I can see how very anxious you are.
I strongly suggest you read this link, and if you don't feel reassured that you are not presenting with ALS symptoms, read it again, really slowly. It is our official position and helps our paralysed members on breathing machines not to have to repeat these same answers.

You really don't present anything that would suggest ALS, and that is the only disease we discuss here and know about.
Please keep working with your doctors and follow any advice or strategies they suggest for the anxiety you are feeling as it will definitely exacerbate your symptoms.
 

Foxich109

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@affected thank you for your kind and sympathetic response. I mean no disrespect to anyone suffering with this awful disease, my sincerest best wishes for all of you.
 

lgelb

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Nothing in your account suggests ALS. I am sure the EMG will be reassuring. Google can have a powerful effect on the mind, which in turn has a powerful effect on the body. If there is a neurological issue, it is likely much more treatable than ALS. At your age, it's much more likely systemic, so I would make sure your internist has done a complete evaluation.

Best,
Laurie
 

Foxich109

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Hi @lgelb thanks for taking the time to respond. Hopefully the EMG will be clear/point me in the right direction of what is wrong. Seem to be having a lot of muscle tightness in my shoulder, thigh and groins at the moment as well as pain across all my knuckles when bending them.
 

Foxich109

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Hi all, with the EMG not being until the 14th June. I was just wondering if anyone could provide a little further advice, no problems if not I appreciate that you all answer lots of things like this and have much more going on in your own lives so may feel I have already taken enough of your time up . I am now having excessive lines and wrinkles in my fingertips that are slightly sore, parting of ring and little finger and pain in all knuckle joints when I am using my hands. I am struggling to sleep in any position, except my back as it ‘falls asleep’ or tingles and is constantly waking me up.
This, as well as the full body fasciculations, muscle tightness in groins, shoulders, thighs and subjective weakness is further concerning me. Are these symptoms that are consistent with ALS? I have seen that the lines similar to mine are/can be attributed to Neuro defects.
I have been getting progressively worse/increasing symptoms for just over 5 months now.
Thanks for all you guys to for everyone in need.
 

lgelb

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We are not going to see ALS no matter how many symptoms you layer on. As before, I would suggest keeping in touch with your internist and doing any labs or other testing they may recommend. If your back is a problem in sleeping, the first place to look is your mattress and pillow.
 

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Your symptoms are not consistent with ALS.
Your EMG is really close now.
Let us know the results, we can't do a single thing until then, but you can try to make the most of the next week for your own sake.
 

Foxich109

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Hi all,
Want to just say thank you for your advice, kind nature and compassion during people’s time of need and in some cases their darkest hour while suffering unmeasurable suffering yourselves. I have just had an EMG that was clean. I don’t know where this leaves me but extremely fortunately not with ALS I believe. I’ll work to find out with doctor what is wrong with me but again thank you. I will donate and aim to do some fundraising when I am better because to have no definitive test or better treatment in this day and age is just not good enough.

for others who are worrying etc my symptoms are
Fasciculations (whole body)
What I feel is weakness (not clinical)
What I feel is atrophy (not diagnosed)
Mottled skin on palms
Lines on ends of fingers
Some headaches
All symmetrical.
 

Nikki J

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Congratulations. Best of luck and long life to you!
 

Bestfriends14

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Foxich109

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Hi all,
I know it’s not a health forum and Neurophysiologist said while I was in the room EMG was clear. But is there a reason that it wouldn’t even pick up fasciculations that are clearly visible? After 7 months of symptoms, don’t seem to be getting any better I still have no diagnosis of what is wrong. I am not technical to understand this report but if someone who is can just explain briefly what it means or why it wouldn’t show fasciculations? I don’t expect a response from anyone that has difficulties replying.

Thank you if you can and are able to just spare a minute. Best wishes to you all
 

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Nikki J

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benign fasciculations do not always show on emg. That is just the way it is and the fact that you have them and they didn’t show does not mean the emg isn’t valid.

as you were told by your neurophysiologist your emg was clear - normal with no signs of denervation at all and ALS is a disease of active and chronic denervation. your first image is the emg you can see it says nil and normal across the board. The emg is what counts for ALS. The page with the numbers is the ncs and not related to ALS they would have told you if that was abnormal

please work with your doctor to find out what is wrong.
 

Foxich109

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Sorry to badger, as symptoms continue @Nikki J or anyone that might possibly be able to advise why the recruitment pattern was not tested and if this is an important tool in MND diagnosis?
 
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