View Full Version : Worried about als

21-12-19, 08:17
Hi all
Thankyou for letting me join and would really appreciate some feedback as I'm a wreck with worry!!
About a month ago I went to the Dr about my ankle that had been painful and swollen a few weeks previously, I was concerned I had foot drop and started worrying about mnd!! Also had twitching in both eyes. GP said it wasn't foot drop and did strength and reflexes all OK. So a week later the twitching started all over in different parts on body and speech seemed off, can't seem to pronounce words and get muddled. Saw gp last week and done strength tests again, checked tongue and did cranial nerve testing. So scared, please help!!

22-12-19, 18:39
Hi again
Forgot to mention that I have ms too. I don't know if the twitching and the speech is related and now I am worried that I have both ms and mnd. Please can anyone advise? When I say twitching it's not noticeable, feels more like little pings going off in different places. I also read that if you can see twitching it's not good? I am so concerned with what's going on and so anxious!! How likely is it to have both neurological conditions at same time? Thanks again

22-12-19, 22:29
Hello I'm having a similar problem with the twitching first noticed it in my eyes 2 weeks ago but now can feel it in different parts of my body. I feel mine in my eyes after blinking or winking

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22-12-19, 22:48
Read THIS (https://www.nomorepanic.co.uk/showthread.php?232384-ALS-and-why-you-DON-T-have-it!) as many times as you need to.

Positive thoughts

23-12-19, 12:48
Hi Fishmanpa
Thank you for the info!!
I have read through and it's very useful!!
I'm confused about the twitching as I've read so much stuff on the forum about when it occurs etc!! My twitching is not accompanied by any weakness that I can feel, I'm still doing my everyday jobs which are rather strenuous!! I can still stand and walk on tip toes and walk on heels, but I am worried about my speech in that I can't pronounce words and I'm getting words muddled,when I speak loud it sounds OK and I just don't know what's going on!! As I said I have MS and know that symptoms are similar. I'm trying so hard to think away from Als but with all that's been happening I can't seem to shift the worry!! Thanks for reading!!

03-01-20, 11:31
Sorry to be back again asking questions, but ended up at gp last night in a state of panic. The twitching is still here and I feel that my thigh muscles are aching. Told gp my concerns and she just said how exceedingly rare having ms and mnd together would be. I have appt to see neurologist soon and have to ask them but I am so scared. Please please help, in such a state and can't focus on anything else.

04-01-20, 23:00
ALS is about failure, not feeling. I understand you have MS but MS and ALS are two totally different illnesses and present differently as well. Just because your muscles ache or "feel" weak, doesn't mean ALS. Now, if you can't lift your foot no matter how hard you try, then I'd be concerned. Nothing you describe comes close. I recommend you read this part of the sticky again.

Clinical Weakness—ALS is about failing, not feeling.

ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.
It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work.

And the part about twitching...


If you have muscle twitching and the internet says that is a symptom of ALS, pay attention. Twitching (fasciculations) is sometimes a symptom of ongoing ALS. It is seldom, if ever, a first symptom of ALS (especially if it is all over your body). Twitching is very common and is frequently caused by too much caffeine, Rx meds, fatigue, over-exertion, anxiety, stress, and many other common causes If you have twitching without clinical weakness, atrophy or hyperreflexia, your twitching is probably not from ALS, which is a very, very rare disease..

This is taken from the post of a member who saw Dr Orla Hardiman a leading ALS specialist. "I asked her about contradictory information about fasics being a precursor of MND. Here is her answer 1. As you know, fasics are common in patients with MND. But we don't look for fascics to suspect MND, we look for weakness, atrophy or change in reflexes.2. Fasics themselves are no real indicator of MND or any other disease.3. In most cases, fasics are of benign origin.4. I have NEVER had a patient with BFS who progressed in MND. And I had a lots of MND (and BFS) patients in my clinical practice.5. In most cases PALS don't even notice fasics by themselves. Usually their spouse, or someone else is the first one who notices them."

Check out Benign Fasciculation Syndrome (BFS).

Positive thoughts

05-01-20, 10:36
Hi Fishmanpa
Thank you so much for replying so soon, I really appreciate your input on this.
I have another question to ask.
As I have said the twitching hits all over but have noticed it in my neck now and underneath my chin feels odd, like if I tuck my chin in it hurts like it's a strain, now I'm probably being irrational here but this has got my anxiety up and thinking could this be bulbar onset (have trouble pronouncing words but not slurred). I'm really dreading going to neurologist as scared as what the outcome is going to be!! Once again I thankyou for reading and would appreciate your reply. Thanks so much for your help!!

05-01-20, 14:40
All I'll say is the "Told Ya So Gang" will be on standby.

Positive thoughts

05-01-20, 18:26
Hi again Fishmanpa
Grateful for your speedy reply again!! I've got a feeling also in my tongue, not really numbness but just feels odd, noticed I bite the insides of my cheeks to!! I googled 'tongue numbness' and wish I hadn't!! Now I'm really deep down in this spiralling Als rabbit hole! Sorry to ask you again but I know you are the voice of calm and rational. Could this be Als? Or first symptoms. So so scared!!