Worried about als

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sam94

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Dec 8, 2022
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Learn about ALS
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Country
UK
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Walton-on-Thames
hi my symptons started about 2 weeks ago I had a ache in my jaw on 27th November it felt tight and tough , after a day I then got hypersalivation the next day followed by a consistent dry mouth for 3 days , this chilled out then all of a sudden about a week I had a numb feeling in left leg which almost feels weak I notice it more walking each day there is no pain it just feels heavy, also then noticed my hand and arm it also feels numb/weak I am having trouble typing and doing some simple things, and also a cough and fly symptoms developed I had a positive result for covid-19 2 days ago, just today my face has gone completely numb and weak to the point it was hard to talk and swallow the left hand is the weakest its been and also the left leg its all on one side, I've had bloods done which has ruled out diabetes and other medical conditions so I'm at a limbo I hope its the covid that is causing these issues but they seem very extreme and the symptoms are not coming and going they are just staying put.
 
All those symptoms have been mentioned in Covid and even after Covid is done. If the symptoms continue, see your GP. There is nothing in your post that indicates you have any kind of neuromuscular disease and that's what this forum is all about.

As far as extreme, Covid makes people feel like they are dying. Some do. Some have had symptoms long after Covid.

Let your primary care doctor know of your concern.
 
I would certainly keep in touch with your GP and track what you can do and not do, as COVID can cause stroke and internal bleeds. If your condition does not improve, a CT might be advised. I agree that your issues don't seem related to ALS.

Best,
Laurie
 
I also have ecsess saliva in mouth and its hard to type with the left hand so a issue with nerves is there been gp and physical exam done all fine and bloods done we're okay not sure what was checked, have been referred to neurologist
 
Hi I'm concerned over some symptoms which I just think in my mind will end up an als diagnosis, I posted 6 weeks ago after a covid positive test with some strange symptoms I appreciate a few people on here said early on it seemed linked to the covid but the muscle symptons seem quite extreme after a covid they are as follows

Left hand/thumb/arm weakness- this kind of weakness is mainly left side only my thumb since the first day has been week and seems to be struggling more with movement there's no visual atrophy but its almost if i can feel a muscle more easily then the right thumb and in last week my wrist has also come very week I feel like I can see one of the bones in my wrist, also the bicep and forearm have become heavily week, I can still hold things and pick things up but things even light as coffee cups I seem to struggle i feel like this is progressive weakness , no twitches no pai

My left foot/leg - my left leg has also come weak walking is coming incredibly difficult , no foot drop yet but I feel I'm progressing that way, I have a feeling on the top of my foot on the outside where there is some tissue that this is shrinking, also my big toe won't spread apart much compared to the right side there is also straining when I do this, my ankles are also weakening and I feel tightness in my hamstring and also weakness in the calf

My right side has not had many symptoms I have bicep and forearm weakness but not as heavy at all as the other side, and also my hand feels normal for now, I did wake up a few nights ago with a complete dead arm on this side without laying on it and it did eventually come back, this is my dominant arm but my left foot is my dominant foot.

I've not been sleeping at all well I get 3 hours a night if lucky this has not been by choice, I can still talk and swallow but this seems to get slowly more difficult no slurring as of yet. I also have no pain or twitching which worries me more.


My bloods have come back from a gp with slighly low vitamin d , slightly elevated liver function and pre-diabetes these were done early December, yesterday I went back to gp as I'm.waiting on a neuro appointment for around 16 weeks and another 2-3 weeks for nerve studies , she decided to carry out as best as possible a test on my strength, senses , reflexes and my muscles , no wasting seen by her and muscles and reflexes seemed normal.she was able to check them all other then my foot as she said it's a hard one to get, she told me she doesn't think anything sinister going on and to try get motor neurone out of my head but I can't if I had pain and twitches I'd be more comfortable

I guess my main question is what other conditions could this possibly be as most other muscle related diseases have pain involved that are similar to als and if covid.really could cause all this and this severe , thank you
 
Hello there-

Sorry you're still finding yourself looking for answers. Here is a link that might help you with understanding the growing the evidence of a link between covid and a whole variety of neurological issues. You may find it very informative.

We do not provide much in the way of advice on non-ALS related issues. We are a forum dedicated to supporting those touched by MND. We leave the non ALS related stuff to the medical experts. We do have a little bit of information- a list of a whole variety of conditions that share some symptoms with MND- you will see that it is extensive, though the list is not complete, by any means. Read here for more information.

I am sure your neuro appointment will provide you more information and reassurance.
 
I'm sorry you are still unwell.
Please do read the post Shiftkicker points to above.
Feeling weaker is not clinical weakness. Only a doctor can test for this and you passed that test yesterday.
So that is great news.
Now you can focus on sleep strategies, hydration, ViT D, diet will be essential with the liver and pre-diabetes issues. In fact, you should take that really seriously.
Let us know how the neuro exam goes, but until then, things are in your hands to work on and we can't really provide anything more.
All the best.
 
The only things I haven't mentioned is that I'm a 28 year old male and I don't have anyone in the family with any kind of debilitating disease, the only thing that worries me is I do work in pest control have done for 5 years and work with pesticides they do say exposure can be linked to MND I'm not sure how true this is. Just a last question when I have the EMG done what areas should I ask to be checked? so I know its been done as best as can be and hopefully get that clear result.
 
28 is so young you should not think about ALS at all.
My husband had been so healthy all his life, never in hospital, didn't even know his blood type. So stop looking for connections.
You don't ever ask what areas to be checked at an EMG, not ever. The doctors are really smart and they know what muscles to test. Often it's not the ones you might think, with no medical knowledge, would be the best ones.
Let the doctors who know this stuff do their job.
Honestly, you don't have a single ALS symptom. Continuing to ask these questions is not helping you.
 
Hi just an update I managed to get an EMG done Friday just gone at my local hospital in England by neurophysiology the lady done the nerve conduction studies as normal in my left hand and left foot were I was reporting most the symptoms as i have previously stated, and also done a check on the right side which I guess is compulsory, she also done the EMG left side as that were most symptoms were at the time and because I was worried about issues in the mouth she put the needle on below my lips on the chin line and she asked me to tense my lips she didn't seem to sure about this at the time which worried me but did her best ,

I've not got a report yet but what she did test she said there was no signs of motor neurone disease as when I went in she asked what I was worried about and I said that, since friday on test day I've now noticed weakness on the right foot and right hand similar to the left. I also have more mouth symptoms I can still pronoune words at the minute but struggle to swallow hard foods such as cookies but can swallow everything else fine , I have a saliva build up which makes it hard to fully talk for a long period, my left side neck and shoulder is also feeling weak almost like a stiffness but with no pain can still move it for now, lower back is also feeling weak after driving and waking up, yet again this all since friday ,

I've got an appointment this Friday again with the gp to ask if they can emg the right side and the mouth again and possibly back and shoulder or is this unnecessary after the first clear result? Thanks , hopefully see report friday from gp
 
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"No signs of MND" means just that. You do not need to ask for another EMG. Instead, it would be nice if the clinic had that time for someone for whom a serious neuromuscular disease has yet to be ruled out.

I would seek out a rehabilitation program -- there are post-Covid clinics, although I gather they have long wait lists, but also general physical medicine/rehabilitation programs that specialize in developing regimens for people who have a number of issues with no evident cause as you do. Because you are obviously anxious about your condition and anxiety makes everything physical feel worse, I would also consider counseling. The mind is very powerful and if you dwell on something like a dry mouth, it will become drier. A GP that you trust can also be a great asset and one of the things they do is help you determine what needs some action to "fix" and what will likely become less bothersome with time.

Every toxin imaginable has been linked with ALS in the sense that any toxin can be a trigger for a disease process, but millions of people work with pesticides and don't have ALS. Still, for your overall health and peace of mind, you might consider changing your focus to more natural means of pest control, as is increasingly a thing and can be a good living. In the US, there are credentials for it and I would suppose the same is true in the UK.

Best,
Laurie
 
I hear you loud and clear when she dome the nerve conduction studies on right side something would of showed up different from the left wouldn't it? No emg needed this side at all them? Thanks again and the neck and mouth symptoms don't sound bulbar related and the location I said she put the needle is fine? Thanks
 
It sounds like a study that obtained the information needed to rule out MND and other serious conditions, yes. You are welcome to post the de-identified report once it's available but it sounds cut and dried.

It really does not matter what I think relative to bulbar symptoms (but no, "weak stiffness in the neck" and "feeling like some foods are hard going" are feelings, not failing), because the evidence is that you don't have any sign of MND. Many studies do not include any bulbar sites at all, and still pick up signs in limbs even in muscles the person thinks are fine.

The best thing you can do for your health is make a list of questions for your next GP appointment that are nothing to do with ALS and all about what you can do to feel better. We have found that sleep, exercise, nutrition, hydration and social activity are all important in feeling your best, so you might list out goals for each.
 
Honestly Sam you don't go to the doctor and ask them to do a test like an EMG again. A repeat one within a week will be useless.
Try reading this really carefully as your fears are running you ragged.

You are not reporting symptoms that would make us think of ALS even a little bit. Instead, you are convincing yourself that every tiny thing is evidence of your fears.
I hope you get this all sorted and back to health soon, but this is not the answer.
 
Why would you take an EMG spot from someone who actually DOES need one? You show no evidence of MND on a variety of fronts. Please keep working with your docs.


Good luck
 
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