worried and waiting

[E6012900]

my husband has concerning symptoms and I'm worried. he's late 30s. 4 months ago- I noticed him slurring speech intermittently. 3 months ago- he notices speech personally. has a difficult time pronouncing some words like his tongue isn't working how he wants it to. begins having daily intermittent headaches 3 months ago (which I know are not a symptom of ALS but he has never had headaches before). recently, having to change the way he types because one of his pinky fingers isn't lifting off keyboard fast enough and it feels tired. established care with neurologist in May before the pinky finger symptom started and at that point his clinical neuro exam was normal, thankfully (no measurable weakness or hyperreflexia). neurologist unsure what etiology of dysarthria was, all labs came back normal (rule out myasthenia gravis). MRI and EMG next month will give us more data/answers, but in the meantime, just trying to ease my worry. hopefully the young age and headaches point to something else... thanks in advance.

 

[Nikki J]

Waiting is hard. Is there a pattern to the timing of headaches?

 

[E6012900]

No pattern. We’ve tried to rule out stress, caffeine, sleep, nutrition, hydration, ergonomics, etc. thankfully they are mild and he can work through them, but it’s still concerning.

 

[wishmobbing]

It's good you have the appointment coming up next month. Like you said, young age and headaches don't raise any red flags for ALS and the EMG should rule it out for good.
Try not to think of this period as waiting, but rather fill it with fun activities to get your mind away from the concerns. If against all odds there is a serious disease at the root of it all, life might get harder in the future and you will never regret having spent the waiting time as living time.
Wishing you patience and a speedy recovery to your husband!

 

[E6012900]

we are still waiting for the EMG but my husband is having new symptoms in the past month. sore wrists, hands, feet, ankles. occasional sore shoulder (repetitive motions at work). soreness sometimes with movement and sometimes with rest. notices fasciculations in his arms, legs, and torso. last week started having an occasional sore jaw. I have asked him if he thinks this is from stress, and not to sound rude or dismissive of his symptoms but wondering if its any possibility it might be "in his head?" to which he replies that he sincerely and really hopes it is.... but we are both scared.

I know the EMG results should give us a clearer path forward, being normal or abnormal, but wondering if these symptoms sounds similar to anyone else on this forum? I am unaware of ALS causing soreness in extremities and google hasn't been very helpful. This diagnostic limbo has been very difficult, especially with him saying he is getting new concerning symptoms as time goes on, though we know if he receives a bad diagnosis that will certainly bring its own set of challenges.

I do have another question, too.... at the EMG will he get an idea from the neurologist of what might be going on at the appointment, or will he have to wait a few days to get results? google has said different things re- neurologist will say you have a clean scan, or, I see abnormalities and this is what it might be and these are next steps to confirm diagnosis... or, we leave and dont hear anything for another few days. the waiting and unknown is really hard, but I know lots of people have experienced this, too. hoping I'm making some sense...thanks in advance

 

[KimT]

It will depend on the neurologist. Johns Hopkins and University of Florida talked to me as they were doing the needle part;Mayo did not. But Mayo contacted me by phone while I was still in the building and scheduled a follow up that afternoon.

I know the wait is hard but they will get to the bottom of it. Is it possible to get the brain and spinal MRIs pushed up so the results are in before EMG?

 

[E6012900]

thank you Kim. That is helpful to know. The mri results were normal, which was good but also scary bc it ruled out other diagnoses.

 

[lgelb]

A clean MRI rules out some diagnoses, but leaves many more still on the table, including rheumatic and connective tissue disorders, and myopathies, from what you have described.