My mums pending diagnosis and symptoms

[Whispa]

Hi all, I’m writing here regarding my mum, and only out of helplessness as the wait times for neurologist here are terrible.

About 12 months ago my mum started having occasional slow speech, as well as loss of balance and some all over weakness. It became more noticeable and she’s now at a point of slow, hoarse, slurred speech, swallowing troubles, trouble with “c” sounds, coughing with food, and very unsteady and unbalanced walk.

Her hand co ordination is fine, she’s weak, but she does still have some strength evenly all over, can stand on toes, she can when asked still do all things just very slow, only thing she can’t do is things like blow up balloon, drink with straw etc. she’s plateaued here for a solid few months, however is on steroids and without them her swallow and cough is worse

Her Dr doesn’t feel she’s presenting the way she has ever seen MND, however the Neuro tech that did her EMG went into panic (very unprofessionally) about it, and told her to see Neuro urgent, but his test findings did not conclude MND. Getting into neurologist is taking so long, after being on the urgent list since September still waiting.

I read in the thread could this be asl, about the difference between feeling weak and failing to be able to do anything, does this sound to any of you, similar to how you are/were? The fact that she’s weak but still even all over?

With all the obsessive reading I know I should not be doing about MND, my heart breaks for all of you, but I also admire the strength you all show in fighting this awful disease

 

[lgelb]

Can you post her EMG tables and conclusions without her details? That would help us be more useful.

From your description, bulbar onset ALS is a possibility, but we would not expect that to respond to steroids, and steroids in themselves can cause muscle damage over time, so it would be important to know what they think they are treating that way.

Best,
Laurie

 

[Whispa]

Hi, thank you for your response. We don’t unfortunately have her EMG results, the tech sent them straight to her doctor and mum didnt get a copy at this stage. The steroids are because, at one stage they suspected maybe she has statin myopathy, so commenced steroids. Tests have not backed that up, however each time she tries to wean off the steroids the throat becomes very noticeably worse so she’s been advised to stay on around 25mg til diagnosis.
I should ad also that she’s 65, quite overweight, and her leg mobility issues have been getting worse for at least 4 years now, I remembered a time earlier when she sat on the grass with me 10 years ago and couldnt get back up, so wondering if that is even anything to do with it, as it’s hard to say whether it’s bulbar onset, if those issues came first, or whether they are unrelated and just due to poor overall fitness

 

[Nikki J]

As Laurie says the steroids should not be helping if it were MND. You also said the EMG was abnormal but did not show MND. What was she told it indicated? If she does not know and wants to she should talk to her doctor. She should also be able to request a copy of the report. There are many things that are found on emg besides ALS