Myclonus, abnormal fatigue in legs , Podromal phase

[VivPa20]

Hello everyone ,
Thanks in Advance for reading this post .
My husband who is 54 years old started at the end of May (almost 4 months ago) with myclonus in left shoulder , and left fingers , rest less leg and with the myclonus ( during the day as well as nocturnal ) itch was present too for some reason . A couple of weeks later intermittent fasciculations in both calves (after waking and during sleep ) ,and left deltoid .
My husband actually started with abnormal fatigue in legs for 2 years now ( , below knees only ) after playing soccer and now is even after long walks . We , saw a Neurologyst , normal clinical and normal Emg . Dr said he is fine “now “ and didn’t elaborate . We need to scheduled a follow up appt .
I have read your post and understand that weakness is crucial to make a diagnosis .he doesn’t have it .
My question can he be in a prodromal phase of ALS . ? Can mild motor impairment ( reduce excercise tolerance, constant calves stiffness ) show early on EMG ? . Some of His symptoms were so abrupt back in May and they remain that I am extremely scared . Neurologyst who did EmG has an expertise in ALS patients .
Thanks from the bottom of my heart for reading my post and answer my questions.
Vivi

 

[Nikki J]

The ALS specialists won’t call prodromal with reduced exercise intolerance and stiff calves ( but apparently no spasticity as a normal clinical exam. ). I know someone who is a documented carrier with some abnormalities on exam that was told not prodromal as their emg was normal. And Dr Benatar’s examples in a presentation for mmi all had abnormal emgs if I recall correctly

Exercise intolerance is pretty non specific

 

[lgelb]

There are good drugs for RLS. If he has it (a sleep study to find out for sure and rule out other sleep problems might be appropriate), that would be a starting point once B vitamin and iron deficiencies are ruled out. If he's not a big greens eater, a low-dose magnesium citrate supplement might help.

RLS and similar movement disorders can show up during the day as well, but the main thing is, they disrupt sleep and make movement/energy use harder overall.

 

[VivPa20]

Thank you so much to both of you .!!
I understand abnormal fatigue in legs is not specific but when I put everytthing together myclonus ,intermittent fascocualtions , constant calves stiffness , some weird movements during sleep , his age and all this was so abrupt that even remember the day and the time when myclonus started I can’t help but ask myself all this questions and think about Als.( from what I read ) .
Neurologist told me EMG normal is very reassuring but let’s see him in a few months just to make sure and another neurologist said if he develops weakness then it is time to scheduled appointment . All this leaves me confused and we still don’t know why he is having all this symptoms ( blood work fine , brain MRI fine ) we decided to go for a sleep study , neurologist didn’t even mention it . We want to go for it . It is very confusing . I thank you for your patience .

 

[VivPa20]

Hello everyone ,
I wanted to ask if anyone had myclonus especially nocturnal as an initial symptom of ALS .This is one of the most prominent symptom my husband has at this time . As I mentioned before the initial symptom was so abrupt it was like if his nervous system was on fire . I am just wondering if myclonus is seen in ALS especially at onset because literature is not very clear about this .
Thanks so much in advance for any feedback . I am very concerned .
Vivi

 

[VivPa20]

Good morning and very sorry to bother … does anyone have an answer for my question about myclonus ? . Thanks in advance for your feedback .

 

[Nikki J]

I don’t believe it is an ALS symptom. I don’t know what is wrong with him but it doesn’t sound like ALS.

 

[lgelb]

I'm glad you're working on a sleep study, which could be very revealing.

 

[VivPa20]

Thank you very much Nikki and Igelb !! . It has been a very stressful time . Let see what happens . Praying.

 

[VivPa20]

Good afternoon everyone.
I would like to ask clarification about seeing sensory symptoms like burning in calves and RLS at ALS onset . I did read the section “ Read before posting “ and I understand sensory symptoms point away from Al’s but I read other post from instance from 2018 in this forum and it seems that sensory issues are seen at ALS onset in some cases . Sorry for my ignorance , I may be wrong or misunderstanding what I read . Just wanted to understand better . My husband does have some burning , plus other symptoms I mentioned above and it is pending for a sleep study . I thank so much in advance for your feed back .
Viv

 

[Nikki J]

I don’t know what you read so can not directly comment. It is fact that some PALS.have comorbidities and consequently experience sensory symptoms but anyway you have reported normal exam normal emg and no failure. PALS have all of those unfortunately

Sensory involvement from ALS early is rare. When you have sensory symptoms without clinical weakness and a normal emg you should be looking elsewhere

 

[VivPa20]

Thank you for your reply Nikki . The post I read is from KarenNwemdyn( moderator) from Oct 15/2018 and others replied to her as well with sensory issues . Just wanted to understand better . Yes we are pending for a sleep study and a follow up appt with Neurologyst and a movement disorder Dr to try to figure out what is going on with my husband . Even the Neurologyst with his normal EMG said to us that a follow up appt should be Scheduled to “make sure “ since he has fasciculations and I assume because of his age ( 54 ) I am not sure . She didn’t say much more . So In the mean time I am asking questions to have a better picture and also to know what to ask in upcoming appts . Thanks again the information .
Viv

 

[Nikki J]

Karen was sadly well into her progression when she experienced that. If you search burning and Karen’s posts you will see MANY posts where she told people sensory issues point away from ALS. THE two people who replied also had their diagnoses distantly. Also, one had comorbidities that cause sensory issues , the other had Upper motor neuron disease. This was in absolutely no way a discussion of presenting symptoms

 

[VivPa20]

Hello everyone and thanks for your patience . I have a question regarding fasciculations . My husband still have them since May they have been seen in 5 months already in calves , arms , belly , tights but they are quick and sporadically from what he or I have noticed ( he doesn’t always feel them ) . My question is , this pattern of twitching has been seen in ALS patients who have twitch first ? Or they tend to be different as time pass. He also has myoclonus or appear to have that ( not sure ) . His sleep study is tonight . I am very worry . Thanks again

 

[lgelb]

Your question has been answered. As we have previously discussed, months of fascics and other abnormal muscle movement without weakness or stiffness that reduces function is not worrisome for ALS, especially when coupled with a normal EMG.

Let us know the sleep study results.