Could this be ALS?

[ashleyx]

Good afternoon, I have read all of the pinned posts and they are great and very informative.

I am still a little confused and uncertain. And looking for some advice.

Some advice on my symptoms but also how to proceed with doctors etc to be taken seriously.

I don't know how long my symptoms have been going on. As I may have ignored them or whatever. But 6 weeks ago this all started from what I know.

To start with - My right arm was feeling heavy. Weaker than normal! My grip was odd. I could grab things but it felt odd to do so. I'd have to shake my hand and try again.
I couldn't ease this. Tried heat, massage etc. I decided to Google. (Bad idea ofcoufse) and it came up ALS. Now this isn't something I've ever worried about. I was oblivious to that condition. Or MND even being in younger people.

I thought nah it can't be that. Let's read more of the symptoms and check. I came across tongue fasciculations. I thought strange but let's check. And when I stuck my tongue out it shakes like mad. Like not your normal shakes people get if they have it out too long. Mine shakes as soon as I stick it out. Even slightly sticking it out. So I freaked.
I have since learnt that with ALS it happens at rest? Upon checking mine at rest. It doesn't shake. The odd little twitch here and there happens though.


This right arm grip thing has eased up slightly but now I just have pretty bad hand pain. Deep in the palm of my hand.
Keeps getting the feeling like its trying to cramp up. I also keep having pain in my upper arm. And feeling like the muscle is twitching. Like a quick pulsating movement.

My right leg also feels heavier than normal. I can still walk. Stand on my tiptoes, heels etc. But I feel like my right leg looks skinnier than the left. Also the muscle feels softer when I'm tensing.
My right foot also feels sore and not as steady. But again walking is fine and I can balance on each leg. I keep getting the twitching in my right calf too. And sometime it feels like something is moving deep inside.

I also get random twitching in my right eyelid. Not daily. But I also feel pressure in both my left and right temple and upper cheek. Like it's pulling downwards. Droopy. But it's not droopy.

And the final thing I've noticed is with swallowing. Sowm foods I feel them getting stuck in my throat. So I have to swallow again or take a drink.

I've found it mostly to be like toast, rice, steak, red meats etc.

So I've been to my family gp multiple times over this 6 weeks. I've seen 3 different Gps.
The first one said it's not MND/ALS "I'm too young" famous saying from doctors. I told them so many young people have it so that's nonsense.
Anyway he said I'd be in a wheelchair by now. Which is also nonsense.
He checked my bloods to rule out vitamin deficiency etc. He also checked my creatine kanise levels.
Vitamins came back fine and my creatine level came back as 98. In the UK it is anywhere from 25 to 200 for normal range. So he said that's fine and good news.

I've spoke to another doctor that thought maybe it's functional neurological disorder. So he sent a referral to a functional neurologist.

And the third doctor, a newly qualified one. said she thinks it's half anxiety and half a neurological issue. My original doctor (the first one) isn't happy with her remarks and said not to listen.

Anyway, I seen the functional neurologist 5 days ago. I explained to her everything that was going on and what I'm worried about.
She asked me to walk around the room. Then walk heel to toe. Then got me to lie on the bed and checked my strength and reflexes. She claimed they were fine. But I did feel them stronger than normal. And also the one under my feet was basically non existent. No movement.

She sat me down and said to me you don't have ALS. She said "I don't want sued. So if I wasn't sure then I'd tell you and seek another opinion. If I was sure, then I'd also tell you"

She then declared I don't have functional neurological disorder either. And claims its just a very over reactive brain. That I feel everything in my body.

She said she wasn't giving me any further reassurance and doesn't need to see me again.

She also asked me, "do you have any difficulty swallowing toast or steak? " I said yes actually..I have been for a month or so.

Then she ignored it and moved onto another question.
She also looked at my tongue the full way out, then asked me to just sit it against my bottom lip. Asked me to do it twice. Says its not tongue fasciculations. Then left it at that.
Even though its full on shaking..

My issue is..

1. How can she tell me I don't have it without actually doing tests?

2. How can she tell me if she's not a specialist in ALS/MND?

3. Why did she ask me a red flag question.. to which I gave a red flag response and then I was just ignored.

4. What more can I do? How can I get taken seriously?

She has referred me to a neuropsychologist because she thinks they can help with my anxiety.

It's like everyone just points to anxiety.

The amount of stories I've read of people being misdiagnosed as anxiety.

Or the amount of people that have very similar symptoms as mine.

Sorry for the long post. I'm just very confused. Very scared. Feel at a dead end.
Don't know how to be listened to.

I'm a 29 year old female.

 

[Nikki J]

FND specialists are usually neurologists with extra training for fnd so she is expert in neuro exams and yours didn’t show signs of mnd. Steak and toast difficulties are not the first thing with swallow in als. Go to the neuropsychologist see what they say and recommend. You certainly won’t be taken seriously if you refuse to follow the doctor’s treatment plan

Stop googling. First not everything on the web is true. Second what sounds the same often isn’t Third the true number of young onset non genetic ALS patients is very small. They tend to be extremely vocal online so it seems there are more than there are. Fourth head to toe symptoms developing in such a short time is not the way ALS goes especially when you have had a normal exam. Fifth you report many sensory symptoms but no real disability

 

[ashleyx]

What sort of things are difficulties in swallowing in people with ALS?
It's terrifying the way it's happening.
It's like everything is getting stuck with the exception of a few things.

But sausage rolls, chicken, hash browns etc. They all seem to be catching in my throat.
I have to take a drink of water after it. Or I have to clear my throat.

If with all my signs, such as the muscle twitches, and hand grip feeling weird etc. The difficulty swallowing and shaky tongue. Would my neuro exam show something?

 

[Nikki J]

We don’t describe things like that because people can read and then “get” the symptom. Ask for a swallow study perhaps.

If you had ALS YES your exam would show something

 

[lgelb]

Being anxious about all this can dry your mouth and of course make you more conscious of everything as Nikki points out. A speech language pathologist can also evaluate your swallowing in different ways, if it is difficult to get an imaging study done. An ENT can also take a look. But if you can swallow effectively by drinking before or after, there is no harm in a little more hydration, either. Or if you have to eat more slowly, that is best practice anyway. Some people do that just to avoid biting their cheek, swallowing air, what have you.

I also agree that the toast/steak question is not any kind of disease screen. Those are more difficult foods and steak is more difficult for the GI tract as a whole to process, so your throat could be trying to tell you something about the rest of your body, in a way.

Agree that you are not describing ALS. Noting that you are anxious is not dismissing everything as anxiety, but pointing out a major reason why some of these niggles may stick out more for you than other people.

 

[ashleyx]

Im really freaking out.

As 6 weeks ago it started with my right hand feeling odd and the grip felt odd. This has since resolved. However I get alot o twitching in my right bicep now.
My right leg was feeling odd too. Like heavy. I put this down to sciatica. However my right foot is sore when walking.
I also have twitching muscles in my right calf and thigh.
I have twitching muscles in my left leg too. Sometimes in my back on right side. My bum cheek as well.

My tongue feels like it has little electrical impulses in it. Or like tingly. Or popping candy sensation. In my mouth. But doesn't move much.
But when I stick it out, it's a full on shaky tongue tremor.
My right eyelids twitches as well.
My upper top lip.

I feel out of breath easily too.

My doctors keep saying anxiety.
The functional neurologist said anxiety and over active brain. She said it's not ALS. But she never done any tests.
Just checked my strength and reflexes.
She said im fine. But in my letter she stated I had brisk reflexes.
I notice my pinky finger on left hand sometimes twitches, up and down etc.

So I'm not understanding. As brisk reflexes are a sign of ALS.

I'm really freaking cause no one's listening to me. I can't go private as I still have to get a referral from my doctor to a private neurologist.

My doctor said no more testing or reassurance. I am fine and to listen to the neurologist as she is a consultant neurologist.

But I feel like my body feels weaker.

Also, I spoke with some people on an ALS Facebook group. And one of the girls has told me that with how fast my symptoms have all developed. All since 6 weeks ago. She said I don't have long left. I'll be dead soon. Because of how fast progressing my symptoms are.
So im really devastated and broken. Can't stop crying.
I can still walk, and talk, and eat with both hands. I can write with both hands etc. Just my right hand gets painful quickly.
I can walk on my tiptoes, my heels. Heel to toe. I can balance on each leg well.

But ofcourse none of that matters as the lady on the group said I have a fast progressing one, so the rest will fail and happen very quickly then that will be me gone.

 

[Nikki J]

Congratulations. You encountered a troll. Facebook is full of them and people who say they have als when they don’t

Hyperactive reflexes are common in healthy people especially the young and the anxious

Neurologists only start to worry when it is a unilateral reflex in a clinically weak limb and even then it can be other things.

You have worked yourself into hysteria, believing some idiot on facebook over doctors who have seen and examined you. I am very sorry for you but we can not help you

 

[ashleyx]

Do you not think all my symptoms scream ALS?

The muscle twitching in so many areas. The shakey tongue tremor.
The painful hand and foot. Them both feeling weaker etc. My grip feeling a bit odd at times.
Tongue feels like its buzzing in my mouth.
Fingers keep twitching/spasming.

I'm just confused with the consultant neurologist. How can she tell me I am fine. Just from my reflexes, strength etc. Without doing a single test. Not even testing to rule out anything else. Straight up said she doesn't want sued so if she wasn't sure she's say and get another opinion. If she was sure she would say also. She straight up said you don't have it. I. confused by that. As everyone in the group for ALS said they went undiagnosed for months or a year as they were told its anxiety and the only way to rule it out is an EMG.

I'm sorry to be so annoying I don't meant to be so worried

 

[Nikki J]

No your symptoms do not scream als. You clearly found a very toxic fb group. You don’t believe us. You don’t believe your doctors. I hope you see the neuropsychologist soon.

Closing the thread. Do not start another

 

[lgelb]

100%. Block every ALS group and site, as these do not apply to you. Every person with ALS here would love to be in your shoes, because you don't have to worry about ALS, truly.

Shakiness and fascics are not the same.
Feeling weak and being weak are not the same.
Thinking food is getting stuck and being unable to swallow are not the same. Drink something with food; eat slower; tuck your chin, whatever helps.
Pain in your hand and foot is not part of ALS onset.

I would also get to a counselor because your misapprehensions can easily take over what should otherwise be a happy life.

Stop sticking out/looking at your tongue.
Stop looking at your legs or worrying about what they "feel like." They are propelling you where you need to go.
Stop second-guessing the neuro who gave you a clinical exam. She went to school to discern what is ALS and what is not. The randos/trolls on FB did not.

If it will take an EMG to help you feel better, tell her that and she will likely schedule that, though you will be taking a slot from someone more in need. Hopefully, by the time the appointment comes, you can cancel it because you will have realized how silly it is to send good news packing.