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Joined
Dec 10, 2012
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
State
WY
Hi All,
I sincerely apologise for coming on here again. (Last here in 2012).
I just wanted to put my thoughts down into words due to the worry it is causing.
Firstly I’m a 34 year old male who is very overweight and leads a very sedentary lifestyle
I have had a large variety of symptoms which can be attributed to ALS (although as with many things can also be attributed to other things as well).
My most worrying symptom at the moment seems to be onset of bulbar type symptoms.
• The most bothersome of these Is an inability to speak properly, when I speak I seem to be tripping up over words, struggling to find the correct words, even in everyday normal situations I am finding myself saying the wrong word or not finishing a word properly (some examples are this morning saying bye to my son I said ‘Sigh’ instead, and later on in the morning when speaking with someone on the phone when trying to say ‘Speak to you soon’ I just stopped at ‘speak to you’ and left off the final word. This seems to be more of a ‘mind going blank’ problem then a ‘can’t say the word’ problem.
• I mouth breath during sleep rather than through nose
• Sometimes drool during sleep or very very occasionally when talking
• My tounge sits pushing against my front teeth rather than against the top of my mouth.
• I also seem to have minor nasel regurgitation, at times when eating tiny bits of food seems to get stuck at the very back of my nose until I ‘snort’ these back into my throat. I seem to very occasionally choke on saliva (although the majority of the time I have a very dry mouth), my bottom lip/teeth seem numb. I have some perceived problems with swallowing where I feel I have to position food at an optimum place in order to swallow it and often feel as though I need to take a drink immediately after eating to wash away any remaining food that wasn’t swallowed correctly.
• Hypernasality (no history of cleft palate or anything else that could explain this symptom)
• When I stick my tounge out it seems that the point seems to sway ever so slightly to the left (which is the side most of my symptoms relate to).
• When saying ahhh my soft palate doesn’t seem to really rise and looks as though it is already as high up as it can possibley go.
• Bottom lip and teeth feel numb and paralysed
• Post Nasle drip
• Other things I have noticed is twitching although this is all over (eye, hand, calfs, face)
• Myclonick jerks
• Left foot occasionally seems to catch the sole of my foot on the floor when walking (as if my leg is too long)

I am completely convinced I have this horrible disease, I will be visiting my GP tomorrow for a referral to a neurologist but I just needed to get this out of my system, with a 5 year old whom I love more than life itself It really has been effecting me substantially.
Thank you again for anyone who has taken the time to read this.
 

lgelb

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I'm not reading anything to suggest ALS, Yorkshire, but a great deal that suggests sleep-disordered breathing and/or a sleep movement disorder. Struggling for words, saliva issues, jerks, foot dragging, mouth breathing, overweight, sedentary...it's like central casting.

I'd ask your GP to consider a sleep study, which is way more likely to produce something treatable than chasing MND.

Best,
Laurie
 
Joined
Dec 10, 2012
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
State
WY
Hi Igelb,
Thank you for your reply. I am actually set up with an appointment for the sleep clinic so hopefully any results can go some way to offset my worries.
One of my main worries right now is the Hypernasality and minor nasel regurgitation which I cannot really find any other causes for then soft palate weakness (although granted Im no GP so there could be a lot of reasons I’ve not looked into).
I am utterly convinced of a soft palate insufficiency however I am logical and understand that so far only ‘I’ seem to pick up on my symptoms.
Thanks again for your reply, I do hope this is the last you hear from me (unless I can hopefully post to show others that these symptoms are for something else and hopefully reduce someone elses anxiety).
 

judy.king

New member
Joined
Aug 11, 2015
Messages
9
Reason
PALS
Diagnosis
03/2019
Country
US
State
Fl
I would not be quick to rule out MND. Just see a neurologist and get an opinion.
 

Bestfriends14

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Joined
May 7, 2017
Messages
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Reason
CALS
Diagnosis
05/2017
Country
CA
State
Alberta (AB)
Dazzy,

You have been worrying about ALS for 7 years. You have had normal clinical exams and no progressive weakness or inability to do anything, If you had bulbar, you would have known significant weakness by now. Again, 7 years, no progressive weakness and clean clinical exams. Those who have been diagnosed with an MND do not have this type of history.

Best of luck to you.
 
Joined
Dec 10, 2012
Messages
10
Reason
Learn about ALS
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Country
UK
State
WY
Hi Best friend,

It hasn't been 7 years of symptoms (at least not in my head) although the symptoms I described in 2012 are similar in nature there seem to be a lot more additional symptoms this time around and to a stronger degree. However I digress.

I have been back to my GP who doesn't feel that anything is wrong but at my request has referred me to a neurologist (only 22 days to wait).

I feel a bit more relieved today but only because I came to realise my symptoms and duration off symptoms, plus the on/off nature of the symptoms seem to point more towards MS (prob the only person in the world that is hoping Ms ��)

I though I'd give a quick update on the referral but otherwise will be trying to stay away from this forum as it both isn't fair for the people who actually suffer with this disease and for my own mental health.

Hopefully my only return will be to provide an update after the Neuro Appointment.

Thanks again for the replies.

Darren
 
Joined
Dec 10, 2012
Messages
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Reason
Learn about ALS
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00/0000
Country
UK
State
WY
Hi Guys,

I said I would give an update of Neuro appointment after I had been, literally just come out now.

I didn't speak with him specifically about ALS as I didn't want to sway how he percieved my symptoms.

I gave him a long list of everything I perceived to be wrong with me. He did some balance tests, strength tests etc never said these were good or bad.

His exact word were he's going to arrange an MRI or the brain and neck areas. If these come back clear he will arrange a Nerve and Muscle conduction study however he did say that he feels they will likely all come back negative and that I may have to see specific specialists regarding each symptom IE an ENT for the swallowing/nasle problems etc.

It could be a while as he said the MRI will be in about 5 weeks and if clear the N&M studies will be about 4-5 weeks after that.

Again, I'm not letting anxiety take over and so I won't be asking any questions etc until I have had the appointments and got some results.

Darren
 

Nikki J

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Joined
Mar 22, 2012
Messages
7,364
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Good for you for your attitude. It sounds like he is being cautious but very encouraging he does not expect any positive neurology tests

Go do something fun!
 
Joined
Dec 10, 2012
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
State
WY
Hi All,

As promised a quick update. MRI of the brain showed nothing. MRI of the cervical spine showed bulging of the C5/6/7 discs with possible nerve impingement at C7.

The Neuro doesn't believe these have any clinical significance and wouldnt contribuye to the symptoms I described. He's ordering an EMG and NCS.

Symptoms since last time

The most worry for me at least are in two areas

Anomia (I think that's what it's called) I'm still having trouble speaking with constant tripping over words, saying the wrong words (him instead of her etc). Completely forgetting things I.E I'll take a phone message, walk across the room, and forget what I had been told 30 seconds before.

Left foot - Had problems with left foot throughout. Have been having constant twitching/spasming in my left foot and calf for about 4 weeks with almost no let up. Really weird twitching as well that's hard to describe (almost like a popping), and over the past two weeks I noticed that I'd lose sensation in my pinkie toe and the one next to it when driving, this has progressed to my pinkie toe feeling dead. Again hard to describe as it's pretty hard to move your pinkie toe independently anyway but it just feels like an extra limb sat their doing nothing.

I also have an ENT appointment but this isn't until August.

Still very scared and expecting the worse but I'll post again once I've had the EMG and NCS.

God Bless everyone here 🙏
 

lgelb

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Joined
Nov 5, 2009
Messages
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Lost a loved one
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Again, things like spacing out/poor word-finding are often related to sleep/breathing, so I would still look into that. As for the foot, the less mobile you are (given the weight), the more likely pressure/circulation-related feelings are to crop up.

Thanks for the update.
 
Joined
Dec 10, 2012
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
State
WY
Hi Igelb,

I didn't want to clog the post up too much and ramble on so never mentioned the sleep. I have had the sleep device fitted and awaiting the results. Although I have no problems with sleeping at the moment (I have started to increase my sleep from 6 hours to 8 per night). I'm sure the results will be poor or inconclusive (the device made it extremely hard to sleep as it kept waking me up warning me that parts of it had come out of my nose or the electrodes had slipped off my head). I'm hoping they can still pull some results from the few hours I managed to sleep whilst wearing it!

Other than the night I was wearing it sleep seems OK at the moment 👍.

Will defo keep everyone updates as and when I get any further info.

Thanks again for taking the time to respond 🙏
 
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