Concerned mum

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Maurgill517

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Apr 19, 2020
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Learn about ALS
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UK
State
NJ
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Stirling
Hi to everybody.
Thank you for any help at this very difficult time for everybody.

I am writing on behalf of my son who is male, 36 and living at home. He has suffered with chronic anxiety and depression for many years, but what he has suffered over the last 6 months appears much more concerning.

It started in November 2019 when he complained of heart palpitations and shortness of breath. His heart rate was over 100 beats per minute. A heart monitor was fitted for a week which didn’t pick up anything sinister.

In December he complained of fatigue, dry mouth and a subtle weakness in his right arm which he noticed when driving or typing, towards the triceps/upper shoulder area. However it would usually resolve the same day but would come back every few days or so. Often he felt the need to rest it after mundane use.

In January, following a virus, his left eye began twitching. Then shortly afterwards, he complained of a regular spasm on left side of his nose. At some point towards the end of January, issues with sleep began and he said he kept waking up in the middle of the night, often to find 1 or both arms twitching and not being able to get back to sleep, as well as making involuntary noises in his throat whilst breathing. He has since not been able to sleep probably from then all the way to now and has complained of really vivid dreams and always waking. Every single night for over 80 consecutive days now. He also developed twitching in the left side of his face around the jaw line and twitches in his abdomen.

As February and March progressed, his arm weakness he now feels every day though is still functioning. He mentioned waking up one night and lifting his arm and it kept falling straight back down. 3 times until it seems to resolve itself.

Now, and this is where I have got very concerned, is he having swallowing difficulties and complains that he is having difficulty keeping his head up. Again, it seems to be down the left side, with the outlier being the right arm weakness.

He is feeling weakness in his abdomen and his chest muscles and is having a hard time sitting up straight. Twitching in the arms and legs seems to have also got worse and I have seen the twitches in his legs.

He has been to see the doctor numerous times, the last time being in early March where she tested his reflexes and made him do some exercises which she reported was normal. However this was before the swallowing issues and before his arm weakness got to the point it’s at now.

She seems to think it’s anxiety related, however a lot is happening and seems to be getting worse. I am worried because he’s unlikely to be seen anytime soon by a neurologist at the current time.

Thanks for reading and stay safe. M
 
Please read this if you have not already done so

You have not described ALS at all. It does not start that way. ALS symptoms don’t come and go and the weakness is not felt. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described.

Please have him see his doctor to address his concerns. The good news is that you are in the wrong place here.
 
ALS does not start as you have described. It does not appear all over the body as you are stating. ALS starts in one spot (foot, hand, mouth) and moves on from there, bit by bit. The trademark of ALS is muscle failure, which one never gets back, that you have not described. As your son has had a clean, clinical exam, this may be related to anxiety. Keep working with the docs.

Stay safe
 
I would ask about an empiric trial of a low-dose calcium channel blocker, absent any contraindications, if your pulse oximeter shows that his pulse is frequently >100, esp. at rest.

I would also ask about at-home screening for a sleep disorder such as RLS/PLMD. You can certainly record his breathing at night, and there are at-home testing units that can be ordered by a doc. They aren't perfect for the full range of possibilities, but might pick up something. You can also record him with video for documentation. If he has something like that, there are drugs that can help.

Best,
Laurie
 
Sorry for what must be really alarming for you to watch - definitely no signs of ALS in your descriptions, I hope the doctors can follow through to the root for you. You can ask your doctor for tests, but you are best to ask the doctor what they think is next as they are the ones examining him.
 
Thank you all so much for your responses and reassurances. I think he will have to go back to the doctor and will suggest re sleep issues, but probably can wait until the Coronavirus situation calms a bit here. I have made a donation for your kindness. Thank you M
 
Hi again guys, I hope everyone is coping with lockdown. I would also like to ask if I can keep this thread open.

My son went back to the doctor last week and has now been referred to neurology, specifically to check for ALS.

He went to the doctor after having a horrendous evening where he was having difficulty breathing, chest pain and heart palpitations when trying to sleep. The doctor checked his oxygen intake which was 97% at rest and lying down which seemed to convince her that it was probably an anxiety related event.

However, he still cannot swallow fully and has almost developed a lisp when trying to speak certain words. He feels like his mouth and throat are bone dry. He also complained that the muscles on the left side of his mouth were not functioning properly whilst vaping.

He also has relentless fasciculations in his left leg at the knee and just above in particular, but also in the other areas already mentioned like the left side of his face and abdomen. The outlier is his right arm which he feels his tricep muscle has halved in size and gets tired very easily. The muscles to which have been twitching from the start, namely on left side of face and abdomen he feels are losing strength which he can feel when even using them mildly.

The GP checked his cranial nerves and tongue and also a reflex test on his chin which all were seemingly normal. She did not do any further limb reflex tests as she deemed the clear presentation, including babinski, on the 6th of March as sufficient.

I am just confused. The doctor says exactly the words I read here ‘people with motor neurone disease do not have clear clinical presentation’, yet has been referred specifically to check for ALS anyway and his symptoms continue to deteriorate almost daily.

I just wanted to ask what you think based on this, I know it’s not easy when not seeing somebody to give an opinion but you guys are real experts. As a parent, the fact he is being sent specifically to check for ALS with no alternatives mentioned has me very worried.
 
His story is not at all consistent with a motor neuron disease. GPs have a general knowledge about a lot of health conditions, but when it comes down to more unusual things like ALS, they typically fall short. That’s why they refer to specialists. Most GPs see no more than 1-2 cases of ALS/MND in their entire career. The specialist will help sort out what’s going on, but really I wouldn’t be worried about ALS.

You mentioned that your son vapes, and I would be concerned about that as a serious threat to his health. Vaping delivers a large amount of nicotine and other substances which can cause a whole host of problems.
 
I will add the doctor had to put something to justify the referral. She said she thought it was anxiety. If she put reassurance for anxiety that would not be an acceptable reason. Another example would be if someone had a headache. The doctor is pretty sure it is benign but after multiple visits orders an MRI Just headache won’t fly as a reason so they put rule out brain tumour
 
If your son kept asking - do you think I have ALS, the doctor may have referred him for this to appease his worries. We see this often - someone comes here and asks a lot about ALS. We say, this doesn't sound anything like it. Then suddenly they say - I'm being referred to be checked for it, I'm so scared. We find out later, after they are clear that they pushed for it.
Maybe that's all that is happening - the doctor covers all bases, and the person and family jump to conclusions way ahead of time.

Make the most of today, regardless of anything that comes in the future, you won't get today back to do over.
 
Thanks for your responses, it’s appreciated. He did ask about it so it could well be to try to appease his anxiety levels which have noticeably increased. Here is hoping.

It will probably be some time before he is seen, hopefully it will be with good news.

Thanks to everyone, stay safe.
 
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