Concerned about ALS

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Alaidlaw

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Joined
Dec 19, 2023
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Reason
Learn about ALS
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Country
UK
City
Edinburgh
Hi everyone, I want to start by saying how much I appreciate this forum and the consideration & patience of everyone who supports those with ALS & PALS.

Over the last few months, I have developed some concerning symptoms and I am looking for some guidance and I suppose reassurance if possible.

About 8 weeks ago I started developing muscle twitching in my calves which very quickly spread throughout my whole body, quads, hamstrings, glutes, shoulders, biceps, triceps and back within a couple of weeks. Over the last 2 weeks, I’ve started developing twitches in my left hand, specifically in the adductor pollicis & abductor digiti minimi hand. I have also developed twitches in my tongue when it is resting at the bottom of my mouth and the odd twitch in my face, normally around my mouth.

during the first week of having muscle twitches, I started googling and found ALS and all the symptoms that come with it. Within a couple of days, I experienced perceived weakness in my left arm which disappeared within a few days. My left arm does seem to get tired pretty quickly when shaving and my hand shakes a lot when holding a fork but I don’t have any clinical weakness.

I was getting aches and pains in my knees during the first couple of weeks as well but that has also diss spread as well.

My main concern over the last month has been the globus sensation in my throat, it seems to come and go but I’m concerned I might have bulbar onset. I can still swallow and speak but sometimes I struggle to project my voice when forming long sentences.

Throughout the last 8 weeks, I have also experienced internal tremors where it felt like my whole body was shaking, this lasted a couple of weeks, neck pain which comes and goes, jaw tremors during my sleep now and again, myoclonic jerks in my arms and legs which also come and go, these seem to have settled down. Numbness in my middle fingers in both hands during my sleep, this only happened once which has now gone back to normal. My resting heart rate has jumped from 48 BPM to 60 BPM over the last 8 weeks. I think this is probably due to stress though.

I would like to add that I am a relatively fit 31-year-old male who has played football most of my life, I have also performed resistance training since I was 15 so I know my body well. I have still been working out and I don’t seem to have lost any strength or muscle mass so far. As I mentioned above my main concern is bulbar onset.

Finally, I would like to add that I have been to see 4 different doctors regarding my symptoms who have performed neurological and reflex exams which have come back fine. They all think I am suffering from health anxiety and don’t think a neurologist referral necessary at this stage.

I appreciate this has been a long winded post and i am very thankful if you have got this far. Could you please comment and let me know your thoughts. Thank you.
 
My thought is that the simplest explanation, absent any evidence to the contrary, is the one to ride with. Widespread muscle twitching does not augur ALS. If you had bulbar deficits causing throat problems, it wouldn't be a sensation, but inability to use those muscles.

Sometimes tachycardia onset is taken for anxiety. I would ask your GP (who is the one I'd be keeping in touch with, and if you don't trust them, find another) about a 24-hour Holter, or don a wearable to track your pulse throughout the day/night. If your heart is getting fiddly, a calcium channel blocker or beta blocker may be prescribed and can be very helpful in damping down not just the pulse but other signs of your body's being overly amped up.
 
Thanks very much for your response. I will contact my doctor again after the Christmas break.
 
hi there,

I'm looking for some further guidance if possible and again I'm so grateful for the support. I'm concerned because my left hand is starting to feel very awkward. I have developed a tremor in my thumb when my hand is at rest and my index finger seems to be locking when I extend my finger. My whole left hand feels like it's about to cramp and I seem to be having more twitches in it as the days go on. I'm also getting loads of sensory symptoms as well, tingling and numbness in my fingertips. I know sensory symptoms aren't normally associated with ALS but I'm so paranoid that I'm going to be the exception. I don't have clinical weakness as of yet but I was listening to a podcast yesterday when the patient experienced hand cramps followed by twitching then eventually leading to weakness all within 2 months. I first started having twitching in my calf around 3 months ago which very quickly spread to my whole body. I would be so grateful if someone could read over my post and share their opinion bassed on their experience. thank you
 
It doesn’t sound like my experience, my family’s or anyone I know

Suggest you stop googling and pick one doctor to see and work with. Are you being treated for the anxiety they all said you had?
 
hi Nikki, thank you for taking the time to reply. I am currently working with a counsellor and taking sertraline for anxiety which seems to be helping but whenever I get new symptoms my mind keeps going to the worst-case scenario. Over the last couple of days the soft palate in my mouth seems to have collapsed as well, would you be concerned about this? thanks again
 
"Seems to" is the operative phrase, along with "feels very awkward, " etc.

As Nikki suggests, pick a doc to work with, and stop reading/listening about ALS. Your presumption that you are getting "new symptoms" likely doesn't stand up under scrutiny, but if you rotate among docs and read at random, you will never be confident about that. Get off the roller-coaster lest health anxiety ruin your life.
 
hi there,

I have been working with my PCP over the last few months who doesn't seem to be too concerned at the moment but I can't get ALS out of my mind.

over the last month, I've been having a lot of hand twitching, especially my FDI muscles in both hands. both muscles look smaller than they were before. I've looked at old pictures and I never used to have these dents in my hands, which really concerns me. I can also feel a burning sensation deep within the muscles as well.

I've had muscle twitching all over my body for 4 months now without weakness but in concerned about atrophy. would atrophy present before weakness? I need to wait till April to see a neurologist privately. the NHS is struggling in the UK at the moment and there is a long waiting list to see a neurologist.

Another concern of mine is my reflexes, I tested my knee reflexes with a reflex hammer and they were extremely brisk but when the doctor tested them she said they were fine. I had no response to the Babinski test.

i would be extremely grateful if you let me know your thoughts on my situation.

thanks again.
 
Pictures are not allowed. Dents are not atrophy. Weakness precedes atrophy in ALS. NO ONE not even a neurologist can test their own reflexes. I even had one neurologist you felt just watching affected results. He said count the ceiling tiles while he tested them. Please read again the advice we gave you.
 
There are so many things in your life we don’t know what may be causing you to twitch.

The so many 20 and 30 year old posters we see. Again and again I seem to be the
only one to point this out or make reference to it.

ALS is a rare disease even more rare to the rare is someone in their 20s and 30s
to be diagnosed with ALS. Yes, it has happened but, the numbers are very
very few… 6 digits and maybe 7 to 1 overall. against it.

So, back to the first sentence…

Do you drink Energy drinks, do you vape, what meds you take, what OTC
supplements are you taking, are you subconsciously bothered about something
you read online, maybe you’re worried about something at work, maybe something
at home, financial worries.

So then you go to Google (Dr. Google)… all that gets off track and on to the track
“Oh God… this is probably ALS.” So, you begin to research ALS and you find this site.
It’s like fuel injection for Health Anxiety, the cycle begins.
(So many post their symptoms (mostly twitching) without seeing a doctor first.)

Then for many, Dr. Google has so convinced them, even after a normal Neuro exam
and a clean EMG, maybe another Neuro and another EMG they are still not
convinced and continue to post doubt or new symptoms here, regardless to the
assurances from our extremely ALS knowledgeable members it is not ALS.
 
Hi everyone,

Firstly I would like to say thank you for taking the time to read and reply to my post, it's very much appreciated.

I understand that ALS is a rare disease and even rarer for someone in their 20s and 30s to get but it does happen and most people who post here are looking for guidance because they have gone to their PCP and very rarely get taken seriously due to their age bracket.

I'll give you some info regarding my lifestyle, I don't drink any form of caffeine anymore, I don't smoke, I don't vape, and I drink occasionally for social events but that's it. In terms of medication, I take paracetamol and Ibuprofen when needed and I take 100mg of sertraline to help with anxiety. I'm also doing CBT as well.

The supplements taken are magnesium & calcium, vitamin D, multivitamins, vitamin b12 and omega-3 fish oil.

In terms of life stressors I am supposed to be travelling to Canada in the summer but I feel like I can't make any plans because I'm in limbo and can't see a private neurologist until April. I've also had 4 family members pass away within the last 2 years which has taken its toll.

As mentioned above I do struggle with health anxiety hence the sertraline and CBT but I do try my best not to google and I've left all the Facebook support groups I was on. The exposure to anxiety-driven comments all day was harming my mental well-being.

- My current symptoms are, fasciculations, mostly in my calves and tongue but I get the odd pop throughout the day in other muscles. Every muscle seems to be fair game.

- Tongue termor

- mild atrophy in both hands between thumbs and pointer finger. PCP said it was probably due to age but that theory would be too much of a coincidence. My hands have only started to look thinner over the last couple of months.

- myoclonic jerks now and then ( this had reduced a lot)

- internal vibrations (comes and goes )

- mild cramps in hands and calves ( comes and goes but has reduced massively )

- neck pain ( comes and goes )

- slurred speech ( comes and goes. Pretty confident this is anxiety )

Still no weakness after 4 months and two weeks.

My rational brain tells me it's most likely not ALS but the mild hand atrophy and tongue fasciculations concern me. Also, I've not been to see a neurologist yet due to the waiting list.

Again I would be very grateful to here to thoughts.

Thanks again.
 
I think the chances of you having ALS are vanishingly tiny. To your comment about not making being able to make plans though if by some wild chance you did that would not suddenly confine you to the UK. Many of us have traveled extensively well into diagnosis.

It is worrying that your health anxiety is making you put your life on hold. If anything it should help you do what we all should- not delay experiences we want to have because none of us know what life will bring ( of course don’t bankrupt yourself)

Leaving your fb groups was a good step. Leaving here ( block the site if you can’t resist) would be better. Great as the site is for the diagnosed it can be incredibly toxic and dangerous for the anxious , some of whom spend hours searching threads
 
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