Wholeheartedly Believe It's Bulbar Onset

[Dazzaschofield]

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]

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

 

[Dazzaschofield]

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]

I would not be quick to rule out MND. Just see a neurologist and get an opinion.

 

[Bestfriends14]

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.

 

[Dazzaschofield]

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 �&#56883

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

 

[Dazzaschofield]

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]

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!

 

[Dazzaschofield]

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]

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.

 

[Dazzaschofield]

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

 

[Dazzaschofield]

Hi All,

Update time

I have my NCS and EMG tests booked for the 20th July so I suppose the main update will come after that.

I have been to see my sleep doctor and the results were that I have mild sleep apnea. From the results it looks like I don't have obstructive sleep apnea as the majority of the time I was experiencing Hypopneas. It seems as though rather my airways being obstructed during sleep its actually the signal from my brain telling me to breath that isn't working correctly. My breathing becomes that shallow that the I'm experiencing a 40% reduction in oxygen uptake during these 'events'. I have to say this adds to my worries as I believe (rightly or wrongly) that this indicates something neurological rather than obstructive and obviously one of the things on the list of causes is (yep you know it..ALS).

Now although my memory is a little shoddy moment I do believe the symptoms of not breathing when sleeping have been going on for a while, at least 1-2 years so in my mind (again rightly or wrongly) this would indicate away from ALS, please feel free to correct me if I'm wrong but from the little research I've done shallow breathing in ALS would be 1 of 2 things, 1. Respitory onset ALS which if I'm not mistake is even rarer than typical ALS and also has a much faster progression rate so you would expect significant symptoms after 12-24 months or 2. Something that happens to most ALS patients but in the later stages of the disease meaning that by the point respitory issues arose you'd usually have significant findings/degeneration in other areas?

At the moment these are my main issues

- Hypopnea during sleep (confirmed)
- MRI indicates 3x bulging discs but no clinical significance
- Significant twitching in my left foot/calf (although twitching does appear throughout the body but to a lesser degree and mainly on my left side. What I am also at times feeling in my foot appears to be my heartbeat which at first I mistook for twitching.
- Co-ordination issues. I am consistently bumping into things, brushing past things etc
- Stairs. Over the last month I have struggled whilst walking 'mainly' upstairs, I dont know whether this is due to a functional issue or its because I'm thinking about it too much when I do it, but when walking upstairs my left foot feels awkward and I will often feel as though I'm going to trip, this leads to a little hesitance/panic and I have to stop for a second to regain myself before continuing (it helps if I'm holding onto a rail or bannister.
- Speech problems - I seem to be consistently saying stupid things and combining words/wrong words etc for example when asking my son to come and give me "Cuddles and Kisses" and said "Cussles" almost combining the two words, I'm forgetting words halfway through a sentence etc, this is also happening at times when writing and whilst usually fluent at writing the wrong spelling/grammer/word will get typed even though I know what I want to type (I've had to re-write parts of this on multiple occasions and I'm sure there will still be some errors)

Overall being objective (or hopeful) - When I look at myself and think about it I'd think, sleep problems are 2+ years old so discount them, co-ordination issues I can think back to having these for 2+ years so discount them. Speech problems, climbing stairs problem etc I've only noticed after I began thinking ALS so it's possible these have been there a while as well and gone un-noticed or they are a product of extreme anxiety/stress. I can't see any clinical weakness etc and so all this points away from ALS.

At the same time if you look into Hypopnea, co-ordination issues, speech problems, twitching, problems climbing stairs etc it would be difficult to find something that didn't suggest ALS.

Anyway enough rambling (sometimes it just helps to talk), as soon as I get the results from the NCS/EMG I'll update again and see what the future holds.

God bless all on this forumn

 

[affected]

An update after the results of your EMG will be good. You aren't describing ALS at all, not even a bit. I know you think you are. Hopefully after those tests on the 20th your doctors will have some answers or new directions for you. Until then, focus on the great things in life and make the most of every day!

 

[nona]

It STILL doesn't sound like ALS. Although it is a neurological disease, the symptoms are due to muscle weakness and failure. That is, apnea is caused by muscle weakness, not a brain cramp, so to speak. Same with speech. We don't have trouble finding words, we have trouble creating them with our tongues and lips. I had little trouble going UP stairs. It was coming down that required more coordination and balance. You seem to be really reaching to find a connection with ALS. I am glad you will get definitive results soon.

 

[Bestfriends14]

We look forward to an update AFTER your EMG. As you have not mentioned a single thing suggestive of ALS, your EMG will concur and find nothing as well. Of this I am positive.

Perhaps after nearly a decade of chasing ALS, for your own health and happiness, you will finally let this go. Life is too short to not fully appreciate the gift of it. I hope you will learn to do this.

Best to you.