Als at 21?

[Olivia]

I am 21, female and 32 weeks pregnant and can't believe this is happening to me and so fast

Bit of background- my symptoms started properly about 3 weeks ago and progressed rapidly. I had had some discomfort before this that I paid no attention to- aches/numbness that came and went and weakness in left arm that seemed to come and go, the odd cold feeling in muscles. However, 3 weeks ago I had a constant eyelid twitch/tremor/flicker that happened when I tried to close my eyes, I also have this around my nose and mouth, stiffness was present but it has since gone however the flicker hasn't and has been constant for 3 weeks even though it has improved a little.

within days of this I started to get what felt like my muscles popping all over my body, apart from my stomach, I had not lost any strength at this point. This worsened and I started to get tremors/ cold feelings in muscles/jerks of all body parts. This has been getting worse for 3 weeks and now all my muscles feel shaky when I use them, such as when I lift my feet to my calf it is fine but then when I release the muscle it tremors and shakes back down. Also my body feels very stiff.

I am not being taken seriously. I am 21, female and pregnant and it has been put down to anxiety as doctors have said this is not the normal pattern of ALS which I feel strongly I have. And I have been sectioned for arguing that something is really wrong with me and now can't see a neurologist and nobody is listening to my worsening symptoms, I'm so alone and stuck in a mental health hospital I was seen by a consultant neurologist when symptoms first started who didn't find major signs but this was before I started to lose strength and started to shake and tremor and was just when I had the starting symptoms. I feel because of his review nobody is taking my symptoms seriously and it is being put down to mental health despite being able to see my tremors and shakes visibly. I know anxiety is not the case as I can feel my body deteriorating. It is also happening very rapidly as a month ago I had no clue anything was wrong and now I can't move properly without shaking.

I had an EMG & nerve conduction which crazily came out as normal range! :/ did not have this on bulbar symptoms though.

I had no 'muscle popping' (don't know how else to describe) when the EMG was actually being done. Does this matter? As I'm sure it would have showed up if I would have had them when the test was being done.

My symptoms only started around 3 weeks ago, does this matter to the EMG?

As my symptoms have already affected my muscles (causing them to tremor back down after exerting them at full strength) wouldn't something have shown up on the EMG? Or as they don't shake yet when using them at full strength would this have shown up in normal range?

Is it possible for ALS to take this pattern and to happen so rapidly affecting the whole body so quickly? Could my pregnancy have something to do with it?

Are these symptoms typical for any other diseases? Is there any possibility I don't have a degenerative disease despite the symptoms and it affecting my body so rapidly?

also now all my joints crack.
Can't believe this is happening to me so young when I just 2 months ago I thought I had my whole life ahead of me, now I struggle to move properly without tremoring and shaking. So alone and depressed as I know what's happening to me is really bad but nobody is listening.

 

[Nikki J]

You do not have ALS symptoms. What you describe is not ALS. I believe you are correctly diagnosed though of course I am not a doctor who has examined you. I am so very sorry that this joyful time is being ruined by your fears. Please work hard with the staff at the hospital so you can get better and enjoy the rest of your pregnancy and the birth of your child

 

[Lixen]

There is nothing neurologically wrong with you. If you're in a mental health facility you're in the right place. LET THE DOCTORS HELP YOU THERE.*

‎
You do not - I repeat - YOU DO NOT have ALS. No one can help you here.

 

[Olivia]

I wish I didn't mention the mental health, it is only because I was saying there is something really wrong.

This is how it all started...
Constant fibrillations in eyelids when trying to close them and around nose and mouth when using a certain muscle
Popping of muscles all around body
Jerking around all body
Had an episode of jerking and shaking of whole body which was thought to be a psuedoseizure
Face all went stiff around fibrillations (has since gone)
Had pain all down arms and legs
Couldn't move toes (now I can but they are stiff and little toe jerks uncontrollably)
Started to get coldness in muscles, freezing cold like it is in my actual muscle.
Loss of strength- shakes and jerks when lifting arms
All joints crack when getting up/walking etc
Lift feet up to calf and they jerk back down, same with all other limbs.
Feel very stiff but it comes and goes
Pain in muscles

This is progressing rapidly over 3 weeks and has affected my function visibly to others. It is not mental health as people can see my symptoms visibly, it is just that I am not handling it well as I am sure this is something serious and others don't actually know what is wrong with me, they are not saying nothing is wrong with me they just aren't coming to the conclusion I am that it is a degenerative Illness. I do not mean to offend anyone on this site but this is something that is seriously physically happening to me and I would appreciate advice on my physical symptoms.

 

[Atsugi]

Trust us, Olivia. In your posts you didn't include anything that would point toward ALS. Nothing. I can't imagine what failure of the Google search programming would have sent you here.

You've definitely got something going on, but it isn't ALS or anything even related to ALS.

There are two reasons I can't try to diagnose your symptoms: First, I'm not a doctor. We know ALS pretty good, even better than some doctors, but that's all. Trying to give advice on your symptoms would only show my ignorance of medicine and the body. Second, this website is a very serious resource for a very serious disease, and we have limited time and expertise. All our efforts must go to help those who have ALS.

I wish you good luck with your doctors figuring it out.

 

[Olivia]

I haven't had anyone examine me since I started showing signs of weakness- uncontrollable shaking when moving. Can I ask why none of my symptoms are associated with ALS? As I have muscle popping/twitching/rippling and signs of weakness? With a lot of other symptoms. My parents/nurses can visibly see these signs I am only here for my mental health as I haven't handled what is happening in my body in the correct way as obviously I am extremely worried as I am losing control of my body and not moving properly as I'm shaking and jerking along with horrible sensations.

 

[Nikki J]

Shaking, jerking and sensations are not symptoms of ALS at all. ALS starts with one muscle or small group of muscles being unable to perform a task. My ankle collapsed and I fell my sister could not do up a button. It is not an all over disease when it starts. We can't see you but we can tell you it is not ALS. If the nurses think there is something physically wrong with you then they should be advocating for further physician evaluation but whatever this is, and I still think it is probably pregnancy plus anxiety, it is not ALS and you need to talk to the nurses, your therapist and your doctor not us

 

[Olivia]

Has anyone any idea what is happening to me? Good or bad answers I just want an idea to what is going on. My symptoms are very real and can shaking when using my muscles can be seen by others.

 

[ShiftKicker]

Hi Olivia-
The people here are experts on ALS only. It would be irresponsible for anyone online to try to tell you what condition you may be looking at, or contribute further to your very real health fears. Unless we are a doctor actually physically present and observing your symptoms while speaking with you, we are only getting a subjective view of what's going on. No one here is saying you don't have a reason to be concerned, but we are not able to tell you which direction to look. As your condition is further complicated by being pregnant, any health advice you get online is not appropriate. Please work with your doctors in person.

Best wishes

Fiona

 

[KimT]

Olivia,
Please stop posting in this forum. We have tried to convince you that ALS is not your problem. We can't advise you on other physical or mental illnesses here. Explain to your therapist how obsessed you are with ALS. That's the only way to get help. All this stress cannot be good for you or your baby.

 

[AP1981]

I have had onset of ALS while pregnant. What you are describing is not ALS

I reckon you have peri natal depression.

 

[Olivia]

Happening so fast bulbar and limb onset?

I have wrote here before but because of my worsening symptoms and the fact mental health issues have been ruled out I am trying again. I am 21 and heavily pregnant. My onset of whatever this is has been very rapid and taking over my body very fast I have to wait til Tuesday to see a neurologist

Prior to this my left hand ring and pinky finger had been going numb on and off for about a year and I had feelings of my left arm being weak which came and went

It started with bad pain in right leg and left shoulder blade, week later then with a feeling of my muscles popping and rippling in my legs. A few days later my eyelids wouldn't close I have had constant fluttering in then since only when eyes are closed which you can feel and see (happening for over a month and has spread to bridge of nose) stiffness in all this area
Popping feeling started all over body , was very vicious and is still there but has became weaker as I have became weaker
Had an episode of all body jerking and tremoring, admitted to hospital did an MRI etc all clean
Whole body had jerks with popping muscles non stop at this point
Week later shoulders made jerky movements when making them and ankles and wrists would jerk and not move smoothly this is still the same but worse
Other symptoms-
Bad pain in muscles like constant ache but also bad pain that feels like its in my bone happens in all limbs pain is indescribable it's not an ache

Cold/wet feeling under skin and in muscles

Can't bend two of my toes

Hands and legs always go dead with pins and needles

Jerks popping

Can't control hands properly

All joints crack a lot

Muscle weakness everywhere- can not move and part of my body without uncontrollable shaking , tremors especially bad in arms and hands. I lift a water bottle and it feels like I'm lifting bricks and arm shakes uncontrollably

Hands all veiny and look like they've lost muscle can't put them straight without constant tremor

(This body wide tremors/shaking started a few days ago and are literally so bad I can't move without shaking prior to this I had jerky movements of neck, shoulders legs and ankles when I moved them and the odd tremor but not body wide constant shaking like this)

Literally a month ago I was fine and now I can't even move properly

Pain everywhere is bad

Popping got bad in my throat and jaw stated to jerk now have difficulty swallowing liquids and choke a lot and on my own spit and slurring of words is getting more and more keep burping up what feels like sick

Face feels twitchier and stiffer, sometimes get pins and needles sensations in head

I guess I just need some support I know any prognosis isn't gonna be good as symptoms have got so severe already I'm just devastated and don't know why this is happening to me at 21 and so fast! Plus I'm horrified at how I've been treated labelled mentally unwell and fed a ridiculous amount of pills when all I was doing was pleading for help and I was ignored because of my mental health history and the fact my initial symptoms weren't normal of any disease and my odds of getting it was very little. It has taken me getting this bad to get a neurologist review.

Also adding to this I had specialist bloods sent to a specialist lab which came back negative but not sure what they was for.

Also had an emg before symptoms got really bad that seemed to be alright but as I had to arrange this privately the person wasn't fully aware of all symptoms and I didn't have muscle popping when the test was being done? And nothing was done on my face which is the worst with constant fibrillations. But I was still surprised with the result?

Sorry for the long post, I'd ask for some hope but with my symptoms and weakness I doubt there is any. Does anyone have any idea what's going on and why this is happening so fast? A month to make moving so difficult and shaky and affect my WHOLE body. Including throat. Could it be due to my pregnancy or the vast amount of mental health pills they kept giving me? As seem to be getting a lot worse fast since being in hospital (in a mental health unit and took a month to realise it wasn't my mental health which I was telling them from the start)

I've had every other blood test and scan that's ruled out anything else so I guess MND is all that's left as I gather it's a process of elimination

So alone and devastated even without an official diagnosis until I get reviewed

 

[Olivia]

Re: Happening so fast bulbar and limb onset?

Another thing to add- reflexes are ridiculous I can make my leg jump out just my tapping my knee

 

[Olivia]

Re: Happening so fast bulbar and limb onset?

Biggest worry from beginning was because the the twitches in eyes and nose does not go ever and now the swallowing difficulties and slurred speech. Doctors are now concerned after basic neuro exam and worsening symptoms

 

[Olivia]

Re: Happening so fast bulbar and limb onset?

Adding to this I must add I do not want ALS and feel deeply for everyone affected whatever age and would do anything for a less serious diagnosis. However my symptoms keep progressing and I feel I did not explain myself fully and doctors have now said they can not rule it out. Maybe I should have waited until my appointment on Tuesday but I just wanted and advice or any hope.