I’m worried this could be ALS..

[Bbff]

I am 22 male.

Early January, one day my left leg felt weak thought it was from knee surgery so brushed it off .. the day after I noticed my arm and hand started feeling tingly weak. I started panicking as in my leg feeling was still there as well. Then started feeling like I couldn’t swallow. Went to hospital. They ran me for MS. I had an mri was emitted to hospital. The neuro came back and said my mri was suspicious for MS. Due to two small lesions touching ventricles. I lost it. I’ve always have had anxiety about heart, eyes. Anything really have had numerous test in the past.

Anyways, they ran mri of spine and neck all good. Followed up with a neuro. She did Ana test. All good but low normal vit D I was 30 and that’s the start of normal. That day after I went back to hospital my whole body was in burning pain it made it hard to walk. The neuro ordered a emg upper. I did that and she said I have mild carpel tunnel in one hand. and cubital tunnel in both elbows. And muscle spasm in bicep. She then ordered a spinal tap to try to reassure me I’m not dying. And a low spine mri .. I did spinal tap and waiting results. I saw another neurologist this week that the neuro from hospital referred me to. She wants to wait for spinal tap. And go over them she’s not even sure I have Ms. It’s just the lesions were their at make it “suspicious”..

Anyways since after getting out of hospital stay from first stay. I’ve had constant muscle twitches EVERYWHERE.
Left arm feels heavy so does my right at times. Both biceps burn. My thighs burn. And my legs feel weak and shaky. I can’t stop googling. I fear I have a neuro muscular disease or some disease that’s rapid and killing me. I have no family history of anything. Besides heart issues when older. And a few people with autoimmune like chrons, Alopecia and type 1 diabetes. I thought about just going to mental hospital I can’t stop crying and panicking. The minute I wake up I start thinking about symptoms same as the minute I’m going to bed. And throughout the day. I’m constantly checking for atrophy measuring etc. I barely eat since hospital I was 180 and now I’m 165. I’m just so scared. My family friends dad got diagnosed with MG and died within 4-5 years and he only stuck with one opinion. And he became severely disabled .. my dad passed Christmas of 2022 from throat cancer at 62. And I watched him go through hell for 2-3 years. Trach, feeding tube etc. I can’t imagine going through any tough debilitating illness or disease .. everyone who does is so damn strong and I admire every single one of yall.

 

[lgelb]

Very sorry about your dad's cancer. That is a really tough one to go through and I'm sure it left its mark. But he wouldn't want you to be scarred and hiding out forever.

There is no reason to think of ALS, so fortunately, you're in the wrong place here. Even if it's MS, that's more treatable than ever, but people can have small lesions and not MS.

I'm guessing that getting some sun (which also radiates vitamin D -- you can do better than 30) would be a good thing for you.

I would ask about PT for your arms. It's a very common thing (carpal/cubital nerves) but does speak to the opportunity since you are young, to improve your keyboard or texting positioning, take more breaks, not game for long periods, etc.

If you are crying and panicking, I would seek counseling, even via text or video. You can google your city and some keywords to find resources like this, if your health system does not offer counseling on demand. Seems like talking to someone could really help you.

 

[Bbff]

Thank you, for your response and your kind words about my father and what his thoughts would be about it all. It sucks mainly because we use to talk about our struggles together..

and I also appreciate your thoughts on what I’m going through. I almost feel selfish as I know the world does not revolve around me. And other people are going through so much worse.

I went to hospital because of panicking and because my results from spinal tap that got sent to me said RBC (red blood cell count) was 702 so I was freaking out.. they said it was likely do to a traumatic puncture.

He gave me hrydroxazine for anxiety until my neuro app on the 14th for a follow up. Sometimes I just don’t wanna keep living like this. I’m always thinking negative and worse case scenario! My left eye is droopier than my right so now I’m thinking it could be MG.. I’m going to ask for a test for that.

Anyways does carpel tunnel and cubital tunnel look different on a emg than als? Or could it kinda look the same ? I just don’t know how I could still have an auto immune disease if my Ana was negative ?!

 

[lgelb]

Any anti-anxiety med can make your eyelid droop, as can tossing and turning.

Again, counseling is designed to help people who don't want to keep going as they are, which sounds like you.

Yes, emphatically, carpal/cubital issues look different on an EMG than ALS. There is no confusing them. That is like asking if the mechanic is going to mistake the seat belt for the engine.

 

[Bbff]

I was just now able to respond. I’m sorry! I had a spine tap waiting on results. My creatine kinase levels are good. I know I have bad health anxiety and now depression unfortunately.. but I can just tell something’s wrong with my body. Twitching all over never stops. Sometimes hard to walk swallow. And the burning in thighs and biceps are excoriating. I’m scared I have a neuro muscle disease or something’s that’s going to slowly debilitate me.. in two months since hospital stay. I haven’t really eatin nor left bed. I dread waking up to symptoms. If all my tests come back clear and not MS. It would have to point to a muscle disease right?

 

[Nikki J]

You had an emg that ruled out ALS. You are talking about burning which is definitely not an ALS symptom. So you don’t have ALS Ruling out MS would not suddenly invalidate your previous testing

 

[Clearwater AL]

I guess I’ll have to post it again being nobody else picks up on this…
you are just 22 years old. ALS is a rare disease and what is even extremely
rare is for someone just 22 years old being diagnosed with ALS.

You joined Feb 29th, you had seven days to review other threads,
maybe you saw other threads where I posted about the rarity of
teens, those in their 20s and early 30 being extremely rare to be
diagnosed with ALS. I hope you didn’t post your thread just to
get another reply from me.

You do have one current diagnosis… Extreme Health Anxiety !!
You had an EMG that cleared you of ALS. Really, this forum
can’t really be of much help for you further.

 

[Bbff]

I am currently waiting on spinal tap results to confirm MS or not. The brain mri shows two small lesions (demyelination). And all they mentioned was Ms. But I feel like the neuros push me off because of anxiety. And I’m really feeling this way. Laying in bed sleeping crying losing weight muscle pain. Twitching etc. when they just tell me you don’t have ALS, MYSATHENIAS GRAViS, CIDP ETC. how are they ganna know without running tests…?

 

[Nikki J]

You HAD the emg. That is how they ruled out ALS and a lot of other things. They are doing the spinal tap. You had an mri. They are not blowing you off by any means. I hope you don’t have ms either but at least that has decent treatments Please no more posting until you have a diagnosis