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New member
Oct 17, 2018
Nr Swindon
Hi my name is Daniel,

I dont know if I have ALS but reading your posts / threads have helped me significantly on processing everything that has been happening to me in the last month and reading about your strength and sometimes humour during adversity only gives me strength whatever my future holds so thank you.

I am 41 and suffered with IBS for around 10 yrs but have been mainly healthy in the past.

I will just list my symptoms:

1. Have had random fasciculations in fingers / forearm (left) for last year or so just thought it to be repetitive strain injury from overuse of my laptop, but last month has been every day without laptop use. Fasciculations now widespread.

2. Dropped weight from 93kg to 84kg in 3 weeks holding steady now at 85-86kg.

3. I understand that I cant diagnose myself with atrophy but I believe I have lost a great deal of muscle in my legs, arms, shoulders, buttocks, as I have alway been very stocky (clothing fitting that didn't 3-4 weeks previous).

4. Have burning sensations in most muscular regions on and off but consistently on my left side especially my arm.

5. Muscle twitches come and go.

6. Fatigue - Walking feels laboured if I stretch out my stride feels uncomfortable in my hip area, mowed the lawn the other day and my back was burning most of the evening also aching. I also feel exhausted by around 7pm will go to bed early but feel unrefreshed in the morning.

7. Extreme thirst - no matter how much I drink, waking up 5/6 times during the night to quench my thirst as mouth is so dry.

8. Have been having cold sweats for last year.

9. Have started to wake up too both my hands being numb / pins and needles as if I had slept funny on them - I then flex them and they return to normal after a few seconds.

10. Face / Lip / Neck - numbness / burning, I believe I have got some nerve damage to my bottom lip and when I smile the left side of my face doesn't show symmetry to the right my dimples are much more pronounced on the right and my lips raise significantly on the right when I smile.

11. So hungry eating breakfast and puddings where I have not for many many years.

I have browsed the stickies that are available and my main question would be:

Whilst sensory issues are not connected to ALS / MND in most cases but is that 100% the case as I have read in a few places during research on ALS / MND that there can be some cross-over into sensory issues is this correct?

Secondly has anybody else had some of the more vague symptoms I am currently having before diagnosis? Or any other ideas what could be going on?

Not looking for a diagnosis just a little understanding.

I understand that depression, anxiety and stress could lead to some of these symptoms but feel ok within myself.

I have been tested for a stroke whilst my bloods, CT and MRI (Head & Neck) scans have all come back clear I have an EMG on Monday 22nd and have been referred to Neurology.

Thanks for taking time to read my story I apologise in advance if I have posted this incorrectly etc I am a technophobe.

Will update when I receive my EMG results.

All the best to everyone on this forum.

You aren't ticking all the boxes. It doesn't seem you're really ticking any of the boxes. I don't read ALS at all in your post.
Have a read here: It shows a whole list (and which is not at all complete) of conditions that also have lots of boxes to tick.

What blood tests have you had? For example, IBS can cause some pretty serious imbalances/deficiencies in vitamin levels- even if you have been successfully managing it for decades, things can change quite suddenly. Some of which can cause pretty serious neurological issues. So ALS is not at all something you should be focusing on unless all sorts of other things have been eliminated first.
Some of your symptoms are similar to mine, others are not. Do the best you can do to relax. Make certain you tell the neurologist about the possible muscle loss and fatigue.
Waking 5-6 times a night because of thirst just screams diabetes to me, as the weight loss does too. High blood sugar can cause all sorts of neurological issues. I'd get that looked as ASAP! It can also cause the fatigue and overall tiredness. I don't see ALS, but get the blood sugar checked.

Thanks for replies.

I am uncertain what bloods have been tested as these were taken in hospital when I had my facial problems was just told they were all good, I had looked at the possibility of Diabetes due to my extreme thirst, weight loss etc as this can cause nerve damage from what I have read - will speak to my doctor Monday have an appointment booked for after my EMG.

I also looked at the link to my ongoing struggle with IBS and a couple of days before my symptoms become a daily occurrence I had a major IBS episode so maybe it could be linked.

I guess I am just clutching at straws until I have my EMG and Neurology appointment will stay positive................... life goes on!!!

Will update when I receive EMG results and any bloods the doctor take.

All the best,

or you need a sleep study as you are sleeping with your mouth wide open, snoring and it is drying out. you have so many things that could be going on that ALS is not even in the running to joke about considering. not a single ALS box ticked - how wonderful!
Hi to everyone on this forum,

I had the results of my EMG test (22nd Oct) from the doctors yesterday and it was clear (left arm and leg) and was told at the time of the test that he thought it was BFS.

I also have had extensive blood test taken and all fine.

I have come to realise that some of the symptoms I had previously stated has been down to my anxiety / stress and I am working on this with help from my doctor.

But there is still some symptoms that continue that doesn't explain the initial prognosis of BFS -

1. The muscles in both my legs (Quads and calf) and both arms continue to lose size.

2. I am now starting to feel weaker in my arms, legs and hands.

3. I continue to lose weight but I am eating like a horse.

I am awaiting a Neurology appointment which could be months away, whilst it is a positive I have a clear EMG this is overshadowed by the worsening of my symptoms.

Should I ask the doctor for another EMG? Or just wait it out for my Neurology appointment?

Any advice or opinions would be greatly appreciated.

Many thanks,

You don't need another EMG. Yours was clear. You are all set, no ALS. It sounds like anxiety is driving the symptoms you report.
If you have unexplained weight loss this is an issue you should raise with your pcp. It is not clear that you need a neurologist at all
Fantastic, congrats on your clear EMG.

Your PCP can now help you work through whatever health issues you do have - try to let your doctor direct things now. :)
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