Urgent update about undiagnosed neurological disorder

[Monty1973]

Apologies to you for posting a new reread but the last one has been closed down (past threads here and here). Thankyou for taking tge time to read my post. Since Saturday evening I have been regurgating everything from from food to tea. This evening my tongue has gone flaccid and it is now possible to fold the two sides of rhe tongue. I have been in resus at my local Accident and Emergency Deoartment as I have also been having breathing difficulties.

The attending doctor clnicallt examined me and suggested I have bulbar palsy. I have an urgent review with the medical team this morning then an urgent referral to neurology next week. I am however despite also the all over body fasiculations not sure it is ALS. In particular I had a completely normal nerve conduction and emg in late October 2023 and an earlier clear one in August 2023 after tge acute onset of symptoms in August.. I am very scared and more so for my wife who I love so dearly. Any insight or comment would be greatly appreciated. Thank you

 

[rmt]

Your previous post was from 2016, so you have been worried about ALS for almost 8 years. You have had 2 clean EMGs in the last 6 months. You seem to know you have serious health anxiety. Your current symptoms suggest an acute onset of a variety of symptoms, which does not resemble ALS onset.

Hopefully your neurology appointment next week will be helpful.

I also strongly suggest checking in with a mental health professional to work on your health anxiety.

 

[Nikki J]

Given your symptoms reported on your last thread it can’t be bulbar palsy because you have symptoms all over. The emgs say not ALS. As I said last time it doesn’t sound like any ALS I ever heard of. That doesn’t mean there is nothing wrong but A&E is not set up to make complex neurological diagnoses. I hope you are seeing the same neurologist so they can examine you and note changes if any. Consistency is extremely important in cases like yours

 

[ShiftKicker]

I note in your post in October your neuro was considering a channelopathy, and had made testing referrals based on that.

This has been going on for years, and must be very frustrating and frightening for you, however, many of the symptoms you report are not at all related to motor neuron disease. The A&E doctors really focus on the immediate to make sure you are stable enough to go home safely- so while it must have been frightening to hear "MND", that doctor is not the person who will be providing much in the way of follow up, nor providing you the ultimate diagnosis.

When will you be seeing the neurologist next who has been following you all this time?

 

[Monty1973]

Thank you everyone for your replies. Apologies for not getting back sooner, but only just have been discharged from hospital. It seems from the initial testing that I have done in hospital that my neurological problems may be caused by ongoing undiagnosed liver disease. I never knew that liver diseases could cause symptoms such as fasiculations, muscle cramping and myocolonic jerking.

I will hopefully have a doppler ultrasound of the liver soon, which hopefully may find the cause. This may also explain why my emg and nerve conduction testing have come back normal.