Long wait for neurological appointment

Austin_sj

New member
Joined
Aug 28, 2024
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2
Reason
Learn about ALS
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00/0000
Country
UK
Hello,

I have tried to avoid posting as didn’t want to waste anyone’s time and I had hoped I was just tired and anxious. I took the time to read over the guidance posts and then tried to stay off the forum for a few weeks.

I’m 38 with one family member who died due to mnd (maternal grandfather).

I have seen my gp for a second time today and been referred to neurology and I am weighing up paying to go private for peace of mind, however I don’t want to waste money if I am overreacting.

I had some issues with swallowing in Jan/Feb of this year (mostly a weird gurgle sound after swallowing), I was sent for a barium swallow in July which has shown some muscle issues. I now have a follow up endoscopy. At my initial appointment I had no other symptoms and was more worried about cancer (my mum passed away due to oesophageal cancer), but on that front there are no tumours etc.

From August onward I have had a number of low level symptoms. I started to worry I was making mistakes when talking, and my tongue sometimes feels thicker or heavier than normal. My wife has said once or twice she has heard me stumble over a word but nothing major and says she is sure I have stumbled over words in the past. This isn’t on every word, or even on most words, just often enough that I don’t forget about it.
Most mornings my muscle aches in my calves, I get cramps in hands and now for a week or so I have almost a dead arm feeling in my left arm and sort of a strange sensation of heaviness. Lifting my left arm up toward my face feels odd, and I may be imagining this but I seem to be more clumsy picking up things (like I dropped a magnet from the fridge the other day for no reason), my left hand seems to feel tired from typing on my phone .
I have had some weird pins and needles/tingling which I know isn’t common for mnd.
I can’t remember why I started to think about it but once I considered mnd I did spend a few weeks obsessively reading over old threads to try to rule out my symptoms.
I am tired but this is because I have 3 young children including one who is just 4 months old.
The other day I got some weights out that I hadn’t used in months and had no issues in doing some repetitions with my left arm. I’m also not dropping heaving items (I can still carry my daughter for instance), my issues seem to have been with smaller items, and as I said possibly I am no more clumsy than previously.
I booked a follow up and have waited a month going and sadly have veered at times from being fairly certain my symptoms are in my head to being convinced I have mnd.
I had hoped my GP would tell me it was anxiety and at worst send me home with some medication for that.
I also hope the fact that things seemed to start in my throat means symptoms shouldn’t just jump to my arm before my speech is noticeably slurred as like I previously said most of the time I speak with no issue.
My swallow issue seems more prevalent (the gurgle is louder) but I have no issues eating or drinking.

Anyway, I know no one here is a doctor but I am hoping that what I describe sounds so far from anyone’s experience of mnd that I should be reassured and that maybe my gp is referring me for peace of mind?

Just weighing things up before I pay for private treatment on my credit card.
 
I'm sorry about your grandfather.

Especially with a 4-month old (congrats!), it's more likely than not that much of this is more about lack of sleep and too much going on, than anything else. Your mattress and pillow are always worth a look if they could be wearing out.

You could see what the endo reveals before deciding on going private? Eating too fast/on the run can certainly contribute to gurgles. I don't think you have ALS.
 
Thank you for your reply, my hope is that after the endo the ent doctor will be able to diagnose that issue (which does happen reliably every time I swallow) but as a stand alone issue it is far less of a concern than what I was worried about. Lucky the wait for that is only 3 weeks so hopefully it will turn out to be a combo of something in my throat and then the tiredness and anxiety combination from that.
Thank you again, I wish me or my family had access to this forum when my granddad was dealing with it, as we were just in the dark about what to expect. This is clearly an excellent resource filled with caring people.
 
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