Twitchs for 27 months. scared als! :-(

[Flapj]

Allow me to give you a different perspective. While I'm not a sufferer, I've dealt with depression and what I call "scanxiety" after my illnesses. Two heart attacks, triple bypass, stents and Stage IVa head and Neck cancer. Fun eh? There are some members that have dealt with their worst fears as well and are here offering advice and some have worked hard on their anxiety and moved on. I found this site by following obvious sufferers from the cancer forum I was part of to give them a piece of my mind. I ended up staying to try and help. I have a daughter that suffers from depression and anxiety and it's helped me understand things more.

The treatment for my illnesses left me with a plethora of side effects, many of them quite unpleasant. Tack on a pill here and a pill there (7 prescriptions and several more supplements and OTC meds) to help control them and I do Ok. The best medicine for me aside from the prescriptions is to do my best to maintain a positive attitude. "Life is 10% what happens to us and 90% how we handle it" - Charles Swindoll

There are days when I feel I've been run over by a truck but the reality is, I have no choice but to carry on and live the best life I can. I can still have a great day at work even though I felt like sh1t So I push through maintaining the hope that tomorrow will be a better day and don't beat myself up if it isn't. You have to do the same.

Just as I have a catalyst for my symptoms, you do to! Treatment cause mine. Anxiety causes yours. Treat your anxiety and you also treat the symptoms associated with it. And even if treating your anxiety doesn't eliminate the twitching, so what? I would trade the neuropathy, muscle spasms in my neck so bad it makes my eyes water or the general lack of saliva and swallowing issues etc. etc. etc. from surgery, chemo and radiation for some twitchy calves

Positive thoughts

Thank you for posting this and for your many other reassuring posts.

[lolo95fr]

The jury is still out on how long you need to wait to truly consider fasciculations benign. Dr Eisen one of the leading specialists in MND says 8 to 12 months. Some say up to 5 years... There are no hard and fast rules even though we would love that for complete reassurance but it is what it is.

If you only have twitching and absolutely no anomaly on clinical examination after two years, it is extremely unlikely that you will develop ALS. You will always find outlier cases online but even my neurologist said he has never seen to date someone present with widespread fasciculations and no weakness or atrophy progress to ALS.

I also read that sometimes it was necessary to wait 5 to clear the als with the fasciculations. I am so afraid of the als. I twitch all over the body with feet and calves permanently for 27 months. my last visit to the doctor was a year ago. how do I know if I do not have muscle weakness? I sometimes escape small things from my hands and have trouble opening some plastic films. I can carry heavy things. I had twitchs just after reading about als 😔

[Carys]

Please Lolo , don't take steps backwards, read your thread again and the reasons why you DON'T have this illness. Seymour has been struggling himself with an out of control fear of ALS with very similar symptoms to you , and has just been told by a neurologist that there is no MND/ALS.

[Seymour]

I also read that sometimes it was necessary to wait 5 to clear the als with the fasciculations.

This is bullshit. One guy said that but most specialists say 8 months to 2 years but even then if you have a clean EMG and clinical you just don't have ALS. 27 months is more than enough to clear you. More than enough. I've been twitching for 5 months and the ALS specialist said 100% I don't have it and that fasciculations are meaningless if you don't have clinical weakness, upper motor neurons signs (Babinski, sustained clonus, etc.) or EMG findings of widespread denervation/renervation.

[lolo95fr]

This is bullshit. One guy said that but most specialists say 8 months to 2 years but even then if you have a clean EMG and clinical you just don't have ALS. 27 months is more than enough to clear you. More than enough. I've been twitching for 5 months and the ALS specialist said 100% I don't have it and that fasciculations are meaningless if you don't have clinical weakness, upper motor neurons signs (Babinski, sustained clonus, etc.) or EMG findings of widespread denervation/renervation.

that's why the doctor I saw is not concerned with my twitchs. right now, they are growing but my anxiety is at the max. I did not have any emg and I tell myself that this is the only way to exclude the same als after 27 months :-(

[Murphy93]

that's why the doctor I saw is not concerned with my twitchs. right now, they are growing but my anxiety is at the max. I did not have any emg and I tell myself that this is the only way to exclude the same als after 27 months :-(

I must admit seeing the above posts about the waiting time from twitching has triggered me a little . I have been twitching for 10 months now but feel absolutely fine and still go to the gym 4 times a week

I totally believe you are fine lolo- I know exactly how you are feeling and would honestly give anything to erase this fear from my life !

[Carys]

Too much is made of this 'twitching' and possible MND links (the twitching with MND IF it even happens is related to a specific area where the neurons and muscle function are failing) I don't think its helpful to be told about timescales that doctors give to another person in a consultation. The point is there are far more obvious symptoms, and its easy to exclude it anyway via basic neuro tests.

[Murphy93]

Too much is made of this 'twitching' and possible MND links (the twitching with MND IF it even happens is related to a specific area where the neurons and muscle function are failing) I don't think its helpful to be told about timescales that doctors give to another person in a consultation. The point is there are far more obvious symptoms, and its easy to exclude it anyway via basic neuro tests.

Thanks Carys you give great advice on here and have really helped me . I seemed to be doing well for a few weeks but annoyed at myself with this set back . Can’t believe I am entering my 11th of this fear but will do anything to change it . Like you said I have no obvious symptoms I’m bench pressing at the gym everyday but for some reason seem to have this irrational thought .

[Carys]

Murphy really, I've seen too many people with this illness, after 11 months.....those twitches are benign.

[Murphy93]

Murphy really, I've seen too many people with this illness, after 11 months.....those twitches are benign.

Thank you! 😀😀 you really are a saviour . Especially tonight my anxiety has been at a real high!