concerned about my symptoms

[Lisa09]

Hi,I would really appreciate it if someone could read my post, I am very scared,any help is very much appreciated.

First of all I already have been diagnosed with a tremor by 2 neurologists. Also I have twitching over my body also tong twitches. For a while I felt something “pulsing” inside of my body. My other symptoms started with stiffness in my left lower leg. I would describe it similar to restless-leg-syndrome. I couldn’t sit down for more than a few minutes. Driving was difficult that day. The next day it spread to the other side but after a few days it mostly went away. Over the last year I started having bizarre pain in my hand (between thumb and index) when I used my hands (writing, cooking, holding my phone etc) . After a few seconds into doing these activities it was fine. This also came back quite often in the following week. Nevertheless it now has been been away for the last few weeks. Then the tingling all over my body started. Again only lasting a few seconds and always changing positions as well as short-lasting painful muscle cramps over my body I started getting worried. My muscles are very tense which has been confirmed by my physiotherapist. It was only then that I realized I can’t move my left pinky toe anymore. Only in combination with the toe next to it. I also noticed that I can’t spread my left pinky finger while the ring finger stays attached to the other 2. At least not in the way my right hand does. The muscle cramps and stiffness are still present sometimes especially at night. After I do sports the shaking usually gets worse.

I went to a neurologist, got an MRI as well as an EMG. Everything seemed fine. No doctor could tell me what it is. Did anyone here had similar symptoms in the beginning? Could this be the start of ALS? I am very scared as I am only 24 but I’ve read that it can start early in some cases. My grand-father has Alzheimer’s disease, probably due to genetics and I’ve heart that there are genes which are linked to neuro-degenerative diseases in general.

Thanks to everyone who took the time to read my thread. I wish all the best and strength to everyone who has to fight this terrible disease.

 

[Nikki J]

First make sure to read this Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

a lot of your symptoms are sensory ( feelings) which point away from ALS. Also apparently you had a normal neurological exam and you said a normal emg so it is hard to worry about ALS

i don’t know why you think your grandfather’s AD is genetic. He is presumably elderly . aD is an exceedingly common disease in older people so it isn’t unusual to have more than one case in your family history. Also the ALS genetic mutations have not been found to cause AD. Some of them do cause a different kind of dementia but they present differently

 

[lgelb]

I see no reason to think of ALS. You have not described any ongoing loss of function, and have had substantively normal exams and tests. Pinky toes and fingers are often weak as they are less used. Random tingling, unexplained tremors, and twitching doesn't have to mean anything at all.

I would look to improve your hydration before and during sports, video your sleep (you can also ask about a sleep study), and make sure you are doing your stretching in concert with your physio.

Best,
Laurie

 

[affected]

Please talk to your family about your fears and get some help as this is not the least bit related to ALS.
3 senior members have now reassured you of this.
Your fears are running you into a deep rabbit hole that you don't need to go down.
Whatever is going on will surely be best solved through nutrition, hydration and careful exercise and relaxation.

 

[Lisa09]

Hello again, thanks for the answers. While they calmed me down for a while and I didn’t want to spend any more time in this forum but I unfortunately started getting other symptoms and I don’t know that to do.

When smiling my left eye is much smaller than the right one. As if the muscle on the left side wouldn’t work. It is very noticeable in pictures and some friends noticed it as well. I don’t think it is ptosis as the eyelids are not affected themselves. Also I didn’t mention this in the previous post but I had stabbing jaw / ear / face pain always lasting a few seconds back in October before the rest of my symptoms started. It lasted a few weeks and then went away. My doctor said it was coming from my TMJ but my TMJ has never caused any pain like that before. I thought about trigeminal neuralgia which is linked to MS but that would have showed up on the MRI.
Also I have bizarre sensitive tender points which cause pain when I touch them behind/below my ears. I still get jaw pain from time to time. My tongue and lip muscles seem fine. My tremor is also affecting my lips sometimes when smiling or my eyelids when I close my eyes but it affects my entire body. I read online that juvenile ALS can start with facial spasticity. I am not sure whether what I was/ am experiencing is facial spasticity but still it worries me a great deal and I don’t really find any information about it online as JALS seems to be so rare. But considering my age juvenile ALS would make more sense than sporadic ALS.

Is what I am describing considered facial spasticity? Has anyone experienced it? and can JALS start in more than one place? Because of the left pinky toe and because I have muscle twitching, muscle aches and cramps in random places.

I went to my PCP and explained all my symptoms. I couldn’t tell whether he was concerned or not but he seemed surprised that my neurologist didn’t find anything at all explaining my symptoms and ordered more blood tests. My next appointment with my neurologist is only in 2 months. I seriously don’t know what to do anymore. I am convinced that I have this disease and that I have to leave my family behind soon.

Thanks in advance for reading. I wish you all the best.

 

[affected]

You can convince yourself of anything, the mind is a powerful thing.
We have told you that ALS does not happen this way, and your adding 'new' symptoms has changed nothing.

As you said, you see a neurologist again in only 2 months.
Start looking after yourself and live your young life to the fullest. Making up medical things because they 'make sense' to you does not make them so.
Maybe ask your PCP for help with this anxiety as you know that is real and you know this can be treated. It could make the wold of difference.

 

[Clearwater AL]

Lisa... "I went to a neurologist, got an MRI as well as an EMG. Everything seemed fine."

With that and what you have been told above there's nothing more you can post
concerning new or old symptoms asking more questions until two months from now
when you see the neurologist.

You've heard from extremely ALS knowledgeable members. You're convinced...
no one here is.

The best thing you can do soon is get help for Health Anxiety before you spiral
into worse things. Until then...