Very concerned

[Skywalker]

Hey Everyone,

I have been going some issues lately that I would like to get some experienced opinions on. I am a 34 yr old male with two little kids and I have been terrified that something is happening.

2 months ago it started with what I perceived was numbness, but after two months have realized it is like an electric feeling. Anyways, the feeling started in both legs at the same time. I was sitting down to dinner with my wife and I stood up and realized that my legs felt funny. Almost like a swollen feeling with small little cramps/pinching happening when I walked. They did not feel week at that time. I was checked for multiple things and was sent to a vascular doc. The vascular doc cleared after his tests. The mri did not some minor protrusions in cervical neck as well as lumbar. He said nothing that would cause these symptoms. The symptoms remained and were felt throughout most of the day. In present day (2months after initial symptoms) I am having more symptoms that have been causing me great anxiety.

I now get fasiculations all over my body throughout the day.

Electric feeling in feet almost all day, but is not really present when standing. Feet twitch all day.

My neck muscle will feel like they are tight and uncomfortable, but does not look that way in mirror. Twitches a lot too.

Left arms feels week started in deltoid and has now moved into elbow.

Left thumb feels stiff/ tight and sore.

Left forearm is sore.

Sometimes when I wake up I see a pinkish or orange hue (only happened about 4 times in two months)

Middle of back hurts and goes numb through the day (maybe bad posture?)

Lastly, I know this is long, is that several nights a week when I wake up my left arm is dead. Not pins and needles but paralyzed. It regains function quickly when I wiggle shoulder.

I did see neurologist and he did do a NCS, which he said revealed bad carpal tunnel in both sides but a little more in left. He did emg only in the left side where I was indicating symptoms and he told me that it was all normal. I have not seen the report, but that is what he told me immediately after. He told me he tough BFS or cramping BFS. He said don’t worry, but come back in six weeks for follow up. The test did ease some anxiety, but I did go to another neurologist for a physical exam and he reported that everything seemed normal in physical exam except for brisk reflexes in arms and legs. He said it was not pathological and he thought it was in the normal range especially for a young adult. He is a MND specialist. He wants to see the original EMG results and he would like to decide if he should do one himself.

 

[Skywalker]

I am sorry for the long post, but I am just worried.

 

[lgelb]

Skywalker,

Nothing here says "ALS" or anything close. I would carefully evaluate your sleeping surface, exercise and sleep habits (like how much you really get). A mattress that has lost its spring or flex can exacerbate all that you describe, for example. Humidification, room temp, noise, light, stress, screen time are all worth considering, as is your positioning if/when the kids hang out or sleep with you.

Assuming the 2nd neuro agrees with the first, I would ask the first one for a referral to PT to evaluate for mitigating your symptoms and setting up a home regimen for strengthening what needs strengthening. A massage by an MT with a neuromuscular focus wouldn't be a bad idea, either.

If the hue persists or worsens, I would get a retinal exam by an ophthalmologist.

Best,
Laurie

 

[Skywalker]

Thank you so much for your post! You don’t know how much that alleviates some worry. I think I have been putting myself through the mental paces and probably making things worse. The symptoms just jumped out out me. It didn’t help the neurologist today told me I had brisk reflexes. The twitching constant in feet and everywhere else and buzzing in outside of my calf and foot just spook me all day long. I had all my blood work done m, but neuro ordered more today to check for matabolic. I hope he agrees with first neuro when he looks at that report. He said he would do his own if he didn’t agree.

 

[Skywalker]

Thank you so much for your post! You don’t know how much that alleviates some worry. I think I have been putting myself through the mental paces and probably making things worse. The symptoms just jumped out out me. It didn’t help the neurologist today told me I had brisk reflexes. The twitching constant in feet and everywhere else and buzzing in outside of my calf and foot just spook me all day long. I had all my blood work done m, but neuro ordered more today to check for matabolic. I hope he agrees with first neuro when he looks at that report. He said he would do his own if he didn’t agree.

Skywalker,

Nothing here says "ALS" or anything close. I would carefully evaluate your sleeping surface, exercise and sleep habits (like how much you really get). A mattress that has lost its spring or flex can exacerbate all that you describe, for example. Humidification, room temp, noise, light, stress, screen time are all worth considering, as is your positioning if/when the kids hang out or sleep with you.

Assuming the 2nd neuro agrees with the first, I would ask the first one for a referral to PT to evaluate for mitigating your symptoms and setting up a home regimen for strengthening what needs strengthening. A massage by an MT with a neuromuscular focus wouldn't be a bad idea, either.

If the hue persists or worsens, I would get a retinal exam by an ophthalmologist.

Best,
Laurie

Is it even possible for ALS to present weakness in legs and buy weakness I mean strength duration then without any significant changes move to an arm and make it weak within a month?

 

[Skywalker]

EMG NCS results...slightly worried

Hey, I posted a few days back before I had the actual results in hand, but I wanted to see if someone could help me by looking with me. I am extremely worried this is the start of something sinister.

I have been having twitching all over. Symptoms started in legs about 2 months ago and that is when I noticed that my right calf is smaller than left. Within their 2 months span I noticed that my left arm would feel fatigued or lazy. I have woken up several times with it being completely paralyzed. Not numb and tingly, but paralyzed...no feeling at all. It comes back quickly but is scary. The left arm will have days were it does feel kind of normal and I have kept most strength in it. However, my left thumb now kind of stays stiff in the bottom joint. The legs have been about the same, but both have twitching.

I read a report online that specifically stated a strong correlation to decreased conduction velocity and prolonged distal onset latency to ALS starting.

 

[codyclan]

Re: EMG NCS results...slightly worried

Except the report said no findings consistent with ALS. What did your doc say? Your symptoms are not similar to ALS. In ALS, nothing improves. You have been told this before and the EMG states it as well. There is not much more that we can add. Sign off here, consult with your doc to treat the carpal tunnel and enjoy a long and happy life.
Best wishes,
Tracy

 

[Skywalker]

Re: EMG NCS results...slightly worried

I’m sorry. I have just been truly stressed about all this and the Motor nerve issues worry me that it could be the start. I did go back and read an few things from previous posts that suggests the decreased nerve conduction velocity is present it very early stages of ALS. My arm just feels weird and I am worried the EMG was done too early before my arm has lost the 70% nerve fibers as others posters have suggested.

 

[Nikki J]

Re: EMG NCS results...slightly worried

All the patient studies I have found relating to this the patients initially only had an ncs and then later when things worsened they had an emg which revealed ALS

 

[ShiftKicker]

Mod note: Moved thread. Please keep posting on your original thread. It helps members see your whole story.

 

[Skywalker]

Is it possible that the progression isn’t enough to be detected on EMG? Are emg’s Interpreted by doctor or is it calculated using a program?

 

[Nikki J]

The EMG is interpreted by the doctor but there are some calculaions done by the machine. Your symptoms don't sound like ALS, your neuro exam was normal ( brisk reflexes are not abnormal) and your EMG was normal. you have no reason to worry about ALS. No the EMG was not too early.

 

[Skywalker]

Thank you for your time Nikki, it is greatly appreciated. The findings of the ulnar nerve with the conduction velocity reduced, prolonged distal onset latency in my left wrist and left leg as well as no response in my anti sensory wrists Has my fears ramped. All the symptoms in my left with the arm paralyzed feelings in the mornings have me over stressed. I am slightly reassured by some of the sensory symptoms I get in my left arm such as numb skin feeling on deltoid, numb skin feeling on hand and middle back , and sore thumb almost all the time. I read the stickies and have seen enough people be reassured that sensory feelings point away.