Curious happenings,questions

[Poflet]

35 male.

So I will keep this brief. (Some of these are not neurological of course but this has been my progression.

September started with stomachs issues, got worse. Finally in January of this year got referral to gastro.

In December I started getting twitches (whole body, but arches and left tricep are quite consistent) I didn't think anything of it as I have had this before and saw a neuro who said it was stress about 5 years ago.

In January my entire body thinned out but lost no weight (went down a notch on my belt, tightened my watch strap, etc.) no weight loss. I could tell my body composition had changed suddenly over a few weeks.

Starting in February my arms and legs started to shake when doing things (holding my son, just standing, stretching, holding a plate) this was a visibl shaking like the plate would shake when I held something. Twitches are worse. If I am sitting on a seat and raising my calves to hold something my calves will shake.

I can stand, walk, make a fist etc etc. so no singular muscle weakness but I am systemically weaker than I was.

I am currently seeing a neuro. MRI is clean, he wants to do an eeg next in two weeks. After that if it is clean he wants to do an emg, he has pretty much left everything on the table from nothing to ALS. Which he did not think was likely but also did not rule it out.

What really confuses me is the "progression" from what appeared to be a stomachs issue into more neurological symptoms. Still have the stomachs issues but trying to manage with diet.

Thoughts? Thanks for your time.

 

[Nikki J]

Have you been tested for celiac? Celiac can have neurological symptoms sometimes even without gastro but certainly with gastro I would ask.

It does not sound particularly like ALS but your doctor is obviously being thorough

 

[Poflet]

Celiac is a good thought. I did have an endo and colonoscopy done but they did not check for that.

I have noticed that My right leg is fatigued quite quickly. The arch of my foot often just burns quickly. What I have read from all your posts is that ALS doesn't present with sensations. Does weakness in ALS present with muscles not beings able to do as much because they are dying? (Yes I have read the stickies).

Thanks for your attention, the symptoms are strange to me and just don't make any sense. I know all the PALs and CALS have better things to do with their time than reply to a young buck like me but thank you for your time

 

[Firefighter58]

Hello folks, I do have ALS and in all honesty I have never experienced any of the symptoms you speak about, I know others may have, but all the symptoms I had were speech related. Many speak of the symptoms above and many of those folks don't have ALS. To be very honest with you I had never considered ALS or any other disease until I was diagnosed with it. It was all ways thought that I had a mini stroke. I guess what I am saying is why do you people go looking for ALS, what are you going to do if you find it.
Al

 

[Poflet]

I appreciate your reply. I am not looking for ALS just for some insight as to what could be going on as it doesn't make any sense. It is so different from my own body 8 months ago. It is scary. I have been leaning toward something intestinal. It then the introduction of muscles shaking and twitching didn't make any sense.

If I do find ALS I will ball my eyes out, and attempt to communicate to my children and wife that I love them as long as I can.

Thanks

 

[Nikki J]

I would definitely explore celiac. Look at celiac.com and ask for blood tests. If they are positive you would need to be rescoped for a biopsy to confirm. Do not just go gluten free as you would invalidate any testing done after

Consider as well that prolonged gastro issues could upset your nutritional status and lead to vitamin or other body chemistry derangement

 

[Poflet]

Nikki

Thanks that has been my thought as well as it all started with the Gastro issues. The stomached issues I could deal with but the twitching and weakness are bothersome.

J

 

[Atsugi]

Poflet, you have no reason to think of ALS. I never heard of ALS described as you did. Your description doesn't make any sense for ALS.

I suggest looking for something else. Good luck.

 

[Poflet]

Mike,

Thanks for your response. I appreciate the time. I agree it doesn't make sense as most of my issues are systemic and not localized or one specific area (except my right leg arch pain and what not)

Don't worry I won't keep posting new threads with the same question as I have seen others do.

I'll update if anything drastic changes.

 

[Poflet]

Can ALS weakness start in shaking of muscles? After doing some basic stuff, standing around the house, moving a few small things, my legs were literally shaking my whole body while standing and my left arm while holding my phone was shaking quite violently.

Weird happenings.

 

[Poflet]

Well, some updates. Got bloods back on Celiac, magnesium, vit D, and B12. No celiac, magnesium is good, vit D is good, B12 is I guess what's they classify as "borderline?" 288 and they want it at above 400. So I am hoping my doctor will order the next blood work to check for some kind of acid that indicates whether I am B12 deficient.

On the other front, i am exhausted lately. Muscles don't have much pep in them, they all still work but man there isn't much gas in the tank. I can do basic stuff but need to take breaks, legs get weak. Bit again, this is systemic, not just one side of the body the body...
still have the twitches, I can still do normal daily activities normal daily activities, just tired easily.thoughts?

 

[PeterFingerlakes]

Methylmalonic acid and homocysteine are used to confirm suspected B12 deficiency. I have ALS. My prediagnosis impression was that I was getting old and out of shape - I was weak. It was not until a neurologist did a physiscal exam and told me of her findings that I came to realized that I did have localized upper extremity weakness greater on the left, and especially the triceps. Delays in diagnosis of ALS are not chiefly due to incompetence; the disease (or diseases) does not have a uniform presentation or course. Incidentally I was identified as B12 deficient some years prior to ALS diagnosis, and vitamin D deficiency was foujnd in my neurologic evaluation. All this said, it is not clear that you have ALS. Continue with the evaluation.

 

[lgelb]

Welcome, Peter. Feel free to introduce yourself in "Newly Diagnosed."

Tacoma, do you have an EMG scheduled?

 

[Poflet]

I am getting eeg and MRI results today, emg is hopefully next week

 

[Poflet]

Welp, had the Neuro appointment. MRI was clean and EEG was clean. At this point he said he sees no reason to do an EMG. He said he is willing to but it hurts and thinks it will be normal anyway. He said he cannot say I won't develop something in the future but at this point he sees no concern. I talked to him pretty thoroughly and honestly.

I told him about the systemic body changes in January, how my arms are physically smaller than they used to be. How my legs are smaller, yet no change in body weight. I was honest in my surprise of what I thought was neurological development in December as I thought all my stuff was stomach and intestine related.

He said he did have one explanation for everything: the shaking, the body composition changes, the twitching. Anxiety. He said you would be surprised what anxiety can do to your body. He said most people don't want to hear that answer as they want a concrete definitive diagnoses (outside of anxiety) but that often times that is the cause. He also said the body is so complex sometimes we don't know what is really going on and will never find out.

I had him check my reflexes again (he only checked my forearm and knee reflexes) he said they were perfectly normal and if something was serious it would show there. I asked him to check for Babinski but he declined and said it was not necessary.

Sooooo... he said to come see him as needed if something drastically changes. He said the next thing would be an EMG or to treat for the shaking.

Should I get the EMG just for peace of mind? Or is checking the forearm and knee reflexes clean enough to rule out ALS?

Thanks again to everyone for your comments I know for some of you it takes a lot of effort to respond. Maybe see it as giving some people their lives back from anxiety.

Poflet