Very concerning neurological symptoms of late (26 yr old Male)

[NerveMan]

Hello everyone. I'll just give a quick rundown of what's been going on:

Several months ago I developed a numb patch on my left leg on my left thigh. It didn't spread or get worse, but stayed. A few months after that I developed a numb patch on my right leg right under my glute on the outer part of my thigh. Ffwd a few months, and I have severe brain fog, fatigue, jolts of nerve pain in my legs, and other paresthesias.

I went directly to a neurologist, and was first afraid I had MS (b/c of brain fog, fatigue, sensory symptoms, etc.). After a couple follow-ups I got an MRI, and it came back clean (ostensibly). Looks like my clinical exam was fine (i.e. no apparent hyperreflexia or apparent clinical weakness). But...I didn't get an EMG.

So here's where things get squirrely:
1. I was diagnosed with B12 deficiency, and given supplements. The fatigue and brain fog have been improving since I've been taking that, and a lot of the paresthesias in my legs went away....

2. After a couple weeks of B12 therapy, I started getting very dizzy and nauseous and went to my primary care physician, and when she was examining me she said she noticed atrophy in my left leg around my knee. She checked my reflexes and didn't really note anything abnormal (only did the patellar reflexes for some reason).

The odd symptoms that make me fear ALS:
1. Today I was doing some strength tests on my hands, and found that I was unable to squeeze the trigger on my Febreze bottle with my left index finger, but could do so easily with my right index finger. The muscle between my left index finger and thumb was shrunken compared to my right one. When I did the "finger tapping" test where you tap your index finger to your thumb, my left hand was quite sluggish and became sore quickly.

2. For the past couple months, I've noticed it's tough for me to swallow food (always feel like I have a chunk of rice stuck in my throat after swallowing). I chalked this up initially to the acid reflux my doc had diagnosed me with a couple years ago, but am not sure dysphagia happens here. Additionally I feel my voice is very "breathy" and I run outta breath when talking more easily.

3. left leg feels kinda weak when I try to torque my leg to the side (i.e. it's easy to push it down)

4. THE REAL KICKER: My right arm had started to slouch a bit around my shoulder. That is it actually sagged compared to my left arm, and there was atrophy around my right shoulder. I tested my strength and was able to do 10 pushups without a problem, but struggled to do single-arm incline push-ups. My shoulder joint also clicked a lot when moving my arms around.

So...here's why I fear ALS:
1. Clean MRI
2. Noted atrophy in my left leg and some in my right
3. index finger problems (I watched Anthony Carabajal's story and know that's how it started for him too and he was around my age)
4. Right arm slouching.

With the B12 having taken out a lot of the sensory symptoms, and the MRI coming back clean.....I began to fear...ALS, as it cannot be diagnosed with an MRI, and is super insidious.

The dysphagia combined with all the other things make me fear ALS. Also...even tho my neurologist said "your exam was fine" during our 3rd appointment I remember my legs jerked out a bit during the reflexes (patellar and ankle). He didn't check to see if I had a babinski sign

Thank you in advance, and I'd greatly, greatly, greatly appreciate your help on this front

 

[Nikki J]

Asymmetry is normal. Right arm “ slouching” and perceived atrophy if it is there is far more likely to be something else

Anthony has an extensive family history of ALS ( his mother and grandparent had it and I don’t know how many more) and a documented genetic mutation. Without that family history ALS at that age ALS is rare

the neurologist said you had a normal exam. Follow up with your doctor

 

[NerveMan]

@Nikki J Thank you for your response, and my apologies for the delay in mine.
I promise I won't bother you again after this, I'm very sorry if I have already. I apologize for the wall of text, but I beseech you to take a look at it if you don't mind.

I followed your advice, and followed up with my primary care doctor (couldn't get an appt with the neurologist on short notice). I asked my PCP to check:
1. Leg Strength
2. The index finger
3. Shoulder slouching
4. Speech

#1: She said she found leg strength to be normal. Though sometimes when I've tried to do a single-legged squat on my left leg, I find myself collapsing after going half-way down (something that didn't happen about 2 months).

#2: Apparently I overanalyzed my index finger strength stuff and looks like it was normal according to her.

#3: The shoulder slouching she found wasn't super concerning...though I worry if there's something more insidious under the surface? My right pec muscle is slightly atrophied when compared to my left. Though my right hand side is dominant.

#4: She didn't notice any abnormality in my speech like I was fearing at first.

The follow-ups I have for you are:
1. 2 months ago, I woke up with my entire right leg feeling sore, even though I hadn't been to the gym in weeks. This hasn't happened since, but I find that when I go for a brisk walk, I get random cramps in my right leg (calf, thigh, etc.). I've heard cramping (especially in the calf and other leg muscles) can be an initial symptom in MND. Was this your experience? (especially when the cramps are mostly in one leg? [Is this spasticity?]

2. At my very first appt with the neurologist about 2 months ago, he stated my numb patches on my legs (on left leg and right) were due to pinched nerves. My PCP also stated my numb patch on the left leg is probs due to some problem in my L4-L5 vertebrae. Occasionally I got lower-back pain (on and off), but never chronic....are the leg problems really due to lower spine issues? Wouldn't lower-back pain be more continuous?

Take care, and I wish you well

 

[ShiftKicker]

Hello-

You really would need to speak with a neuro about the numb patches. Sensory issues are not something that would cause a neuro to think of ALS (which is a motor control issue). Mind, it sounds like both your doctor and your neuro have provided you with reasons for your current symptoms.

If you feel things have changed, your neuro has a baseline with which to compare, so your best course is to get an appointment with them. I recommend this, not because I think there's anything in what you report a concern for ALS, but because you should be speaking with medical professionals who can examine you in order to figure out what the issue actually is.

All the best

 

[NerveMan]

1. 2 months ago, I woke up with my entire right leg feeling sore, even though I hadn't been to the gym in weeks. This hasn't happened since, but I find that when I go for a brisk walk, I get random cramps in my right leg (calf, thigh, etc.). I've heard cramping (especially in the calf and other leg muscles) can be an initial symptom in MND. Was this your experience? (especially when the cramps are mostly in one leg? [Is this spasticity?]

@ShiftKicker
Is it ever possible to "miss" spasticity in a clinical exam? I went to see the NP who worked for the Neurologist at that point and she did all my reflex tests, and pulled my legs out a little (at the knee) to check for spasticity. She said all my strength tests were normal and my reflexes were normal (no hyperreflexia), and that she didn't detect any spasticity.

3 weeks after this appointment I saw the neurologist himself and when he did the reflex tests, my legs actually seemed to respond more to the reflex hammer (i.e. I actually felt my leg kick out a bit more). However, he said the reflexes were normal...

My primary care physician did my reflexes (only patellar) again about 2 weeks ago, and my legs didn't shoot out or anything. However, whenever she touched the area around my knee, it just felt like my leg was "on edge," like it was "ready to shoot out," but it never happened. I guess it felt like a "restless leg"?

Reason I ask is that when I walk downhill, I find my legs feel a tad stiff, and I feel a vibration near my knee when my feet hit the ground. Is this "patellar clonus"?

Re The Numb Patches: The Neurologist said he felt the one on the right is due to sciatica. I also got stabbing nerve pains when I'd walk long distance sometimes (not always tho). The left side numb patch on my thigh was apparently linked to some other nerve (I don't remember the medical name for it).

 

[lgelb]

It is normal for numb patches and pain that are due to spine issues to come and go. It is like bad wiring.

Similarly, reflexes wax and wane and different docs interpret them differently. That you feel different from one exam to another is not sinister. No one makes diagnoses based solely on reflexes (or numb patches or back pain).

Spasticity that's significant enough to make one think about a neurological disease isn't going to be missed on exam.

In restless leg syndrome, the leg doesn't just feel weird, you have to move it. If you think movement is waking you up, you can video your sleep. But what you describe isn't RLS.

You are probably not bending your knees enough when walking downhill. Many people don't.

All in all, sounds like you're doing a lot of reading about ALS, yet show no clinical signs of it. What's the point of that? Keep walking and stretching, and get off Google.

Best,
Laurie

 

[ShiftKicker]

If you're worried about doctors missing symptoms or signs, there really isn't anything we can do here to reassure you- all we can do is advise you return to your doctor and explain what the issue is. We will not contradict the conclusions a medical professional has drawn, as they examined you in person, and only they can explain to you what their observations were.

Please return to your neuro to ask questions specific to your symptoms, as this forum can't really provide what you are looking for. It's pretty clear you have not been reassured, despite two doctors, a nurse and the people here all telling you ALS is not in the picture. This is not a dismissal of your symptoms, just that ALS does not start the way you are reporting- so to continue asking for more and more specific details is not going to help you find out what the real issue is.

Take care

 

[NerveMan]

@ShiftKicker and @lgelb I took your guys' advice, and I went back to the neurologist for another appointment and expressed my concerns. He didn't do an EMG unfortunately, but stated that my concerns didn't sound like ALS. Apparently in my MRI they found several bulging discs in my spine though, which he says is not an uncommon thing. I don't know how severe bulging discs are and don't know much about the condition...are they curable?

I guess my muscle spasms are from that?

 

[Nikki J]

It sounds like you have an answer for your symptoms. Now you need to address the cause. Are you referred to PT, orthopedics or back to your gp. The symptoms can often resolve with pt and lifestyle. Bulges would not go away without surgery but most people with back issues do not need it. If you are advised pt work hard at it and continue to do your aftercare program. Too many people get better are discharged from pt and then stop their exercises and lifestyle changes and relapse.

 

[NerveMan]

@Nikki J that's a good question, he didn't recommend me for PT or anything for some reason...I'm a little surprised. It's a little scary that surgery might be in my future for my back. So I'm going to get on it ASAP (i.e. figuring out what PT I can do).

Back problems seem to be common in my family (idk if it's hereditary). Maternal Grandfather had spondylitis, my mother has a herniated lumbar disk, and my maternal grandfather's brothers have spinal problems too (usually in the C-spine).

I've heard of scary stories of people who were told their back was fine, but upon 2nd review of the MRI, they were rushed into the OR for surgery...I hope that's not my situation, and am trusting that the doc would've told me if it was that bad. I forgot to ask him about my dysphagia tho...maybe another time

 

[NerveMan]

@lgelb @Nikki J @ShiftKicker
Is it possible for clinical weakness to not appear on a physical exam done by a neurologist and to not order an EMG as a precaution?
I noticed there was atrophy on the underside of my left forearm (but the neuro never mentioned anything).

My legs also feel super wobbly, but the neuro told me there was nothing wrong with my strength. He just asked me to push up against his hand with each leg when I was seated on the table. No other leg strength tests were performed...

Additionally, I noticed today when I was trying to move my pillow, I was struggling to toss the pillow over my head. Of late too, I've noticed the dysphagia has become more prominent. With ALS patients is the dysphagia-related choking instantaneous?

Why can't the neuro just order an EMG as a precaution?

God, this is all so stressful and scary

 

[ShiftKicker]

Hi there-

We do not know why your neurologist made the decisions they did. Your best bet is to communicate your questions to your neuro to get answers. You are asking us to speculate on why your neuro decided certain things, and that is not really something that would net you any real answers as they apply to your care.

Please understand we are limited in the answers we can provide here and can only advise you to ask your neuro. They examined you and can provide the feedback you seek.

Please take care

 

[NerveMan]

@ShiftKicker I'll have to go back to the neurologist then.

I'm starting to feel like I'm developing some bulbar symptoms, as my voice has become quite strained, and the dysphagia is concerning. I'm afraid I'll annoy my neurologist b/c he said my exam was fine last time. For context, I had vocal cord paralysis after a bad flu infection in 9th grade. Things recovered, but my left vocal cord has always been weaker than the right.

However, over these past couple months I've noticed I get out-of-breath very easily when I talk, and feel like there's food stuck in my throat after I swallow (which I chalked up to reflux at first). My voice also feels hoarse. If I inhale right as I swallow food it feels like the food teeter-totters between the wind-pipe and esophagus[though I've never actually choked]. I heard this is what dysphagia is like for those w/ bulbar onset.

I woke up nearly in tears this morning contemplating what'd happen if I did indeed have ALS. This has been so scary. I watched the story of Angelina Fanous, Osiel Mendoza, Beth Hebron, etc. and they were all around my age when they were diagnosed.

I'm also getting twitches in my other muscles besides my forearms.

 

[Clearwater AL]

NerveMan, you've posted 7 messages and 12 replies.

With all your post above this really needs to be addressed to your doctors.

Watching stories of others is not helping your Health Anxiety. Apparently
the neurologist is not concerned about you having ALS. Now you are
feeling Bulbar symptoms like so many before you suffering from
Health Anxiety.

Some may still reply but... copy and print out your post above and others
and take them to a doctors appointment for qualified answers.

Stop searching the Internet, old threads here and seek help for your
Health Anxiety very soon. I hope the path comes forward for you to
at least move on from ALS.

 

[KimT]

If you're having trouble swallowing, see an ENT.

If you're having trouble breathing, see a pulmonologist.

They have simple tests to evaluate swallowing and breathing.

I know it's hard not to think about worst-case scenarios. But, for your own sake, you need to have your questions answered by medical doctors. If either of those two tests shows abnormalities, they will do further investigation.

If waiting and worrying are making you anxious, maybe go to your primary care for some help and also get counseling.