I think my partner has ALS, awaiting diagnosis, he is oblivious

[SheilaM921]

I am very worried about my partner. He has had health issues for about 9 or 10 months. He’s been complaining of worsening weakness and finding it harder to do things. He was sent to a neuro and been told his creatine levels are very low and powder hasn’t brought them up. The neuro seen him a month ago and again yesterday. He’s been told he has lost 50% of his strength on the right side of his body. When he seen him again yesterday he was told the wastage is worse. The neuro pointed out that he has a thick vein sticking out on one side of his chest that wasn’t there last month and that it’s more prominent because he has more muscle loss.

My partner is 40, we have a 6 year old son with autism. The neuro said to him ‘there’s a disease I am thinking this is but it usually happens people older than you, I want to be completely sure before I tell you’ he has an appt to be seen again in a month. Last night I noticed he has muscle twitching which he didn’t even know was happening. He also wakes at night with his arm and leg locked and in alot of pain and randomly his hands shake really badly.

He has no clue that this could be very serious, don’t think he even knows anything about als. His dad died 3 weeks ago and he lives with his blind mother to look after her. I don’t think im jumping the mark here that this seems to point to als, I guess I wanted opinions on if this is similar to how others began? I also don’t know if I should prepare him or let him go to the appt blind, he 100% thinks this will be a simple fix. Im very worried about how he would cope mentally and don’t know if telling him would be better or not. Would appreciate any advice. Thank you

 

[lgelb]

Has he had or is he scheduled for an EMG? If there were suspicion for ALS, I would expect to hear one or the other.

Low creatinine is most often associated with muscular dystrophy or liver disease, not ALS. Without knowing what tests he has had, it is hard to say what is a possibility.

Very sorry to hear about his dad.

You are entitled to ask simple questions like what diagnoses are on the table and what will be done to confirm or rule them out.