ALS paranoid, am I crazy?
 

Hey all,

I've been creeping on the forums for a couple of weeks. Reading over testimonials and replies.

My story; one night about 4 weeks ago I was having trouble with my hands. They felt numb, and I was having pain up my arms.

The following morning I woke to find that both my arms, particularly the left was feeling very clumsy and still very numb. As the days went on, my hands were hurting and my clumsiness continued. I had a hard time typing correctly. I'd grab or reach for stuff and totally slip on grabbing / touching it.

One thing that was weird about my issue was caffeine really really made it worse. My hands would be very shaky and my whole body would feel like it had a small volt electricity going through it. I felt out of control of my movements.

I went to a doctor who referred me to a neurologist. They did an EMG, zapping both arms, then focusing with the needle test on my left.

The neurologist said I had nothing to worry about, no ALS, and he seemed very confident about this. But he was worried about carpal tunnel, especially in my left arm. So I stopped biking and I stopped drinking anything with caffeine.

Over the past two weeks my symptoms haven't improved, but rather gotten a little worse and spread. New things happening left and right.

My legs are feeling fatigued now randomly. I'll wake up in the morning and my thighs will feel like they are recovering from a workout I didn't do. Same with my arms. I could just be sitting and watching tv and one arm or another will start feeling like they are burning. The location is in the upper arm and fore arm randomly. My hands are always a little shaky now. If I hold my hands out straight I can visibly see them shake.

So basically I am getting fatigued sensations all up my arms and legs.

I get like zaps down my legs and in my hands. Not twitching, but like getting shocked randomly on a part of my body which makes it move hard and fast suddenly for no reason.

I've also been having a lot of stiffness in my hands randomly which comes and goes.

I constantly seem to have a dry throat recently and my throat will get an uncomfortable feeling like it is closing up a little, or my mouth will get a zap, similar to that which I get in my lower body and hands.

I am also noticing my issues seem to feel worse towards the end of the day. I've been looking forward to sleeping because by end of the day, my arms are so sore and I am annoyed by the zaping.

All of this has started up in the past 4 weeks.

EMG was good aside from start of carpal in left arm. I got blood work for celiac, lyme, and a few other standard issue blood table checks. All clean.

My issues seem to be getting worse. The mouth / jaw stuff in particular only flaring up within the last week. And my legs deff feel more fatigued / burned than they did in the beginning.

I am not sure what is wrong with me. The doctors have pretty much said I am fine, but I don't feel fine.

I haven't had any muscle twitching, I haven't had a foot drop, altho I've felt clumsy with my legs as of late.

No visible muscle wasting. From what I can tell, I have no issue using my hands once I get over the clumsiness. I can open jars, doors, etc.

Honestly my body worse / issues more apparent in a sitting position.

I ran across and back a grocery parking lot today when I realized I left my wallet in my car, and my legs felt fine. I didn't feel winded or drained. I also attended 2 town events recently which involved a lot of walking around to various booths. Again, no issues with walking / standing, other than feeling a little off balance at times while standing.

Sorry for the long long paranoid post. I know ALS is super serious and I wouldn't come on here looking a diagnosis from anyone. I just want to know if anyone else was having similar issues and what your diagnosis was.

Do my issues sound anything like ALS or a neuro disease?

I am going to schedule an appointment this week with my doc and see if we can get to the bottom of what is going on with me.

The paranoia and anxiety from this has been affecting my work. I just need to figure out what is going on and having people to talk to about it besides my wife would be nice.

Welcome robhsn. :Wave-Hello:

Someone will be along to help.

Hi Robhsn and welcome to Neurotalk. :welcome_sign:

What you're describing really doesn't sound consistent with ALS. Have you been tested for Lyme or MS? I would definitely speak to my Neuro and request testing for those two.

Some of what you described (dry mouth, feeling of throat closing up) could be due to anxiety. Even when we don't feel necessarily anxious we can't prevent the symptoms from manifesting in different ways.

Here's a couple of links to the Lyme and MS forums:

Lyme: http://neurotalk.psychcentral.com/forum91.html

MS: http://neurotalk.psychcentral.com/forum17.html


Speak to your Neuro and let us know what he says. :)

Thanks Kitty

I did go to a neurologist, they preformed some strength tests on my hands and arms, and gave me an EMG on my arms. The neurologist told me I was good, aside from minor carpal tunnel in my left arm. No ALS (he even said money back guaranteed lol), and he didn't mention anything about MS. I am pretty sure he did the reflex test and I didn't have any brisk reflexes.

I went and saw my general physician today. He said all my issues don't really add up to anything he can diagnosis or recommend a test for. He thinks my anxiety might be getting the best of me and messing my body up so he prescribed diazepam. A anxiety and muscle relaxing pill. I am also taking a 24 urine test for some other additional checks, but generally, he doesn't know what is up with me. I am checking back with him in 3 weeks.

I was having some bad cramping in my leg last night. Right around my knee, above and below. I kept trying to move and stretch or curl the leg to see if that would help, eventually it just went away.

My eyes were really feeling weird too at the same time. Like my eye lids were trying to blink even tho I had em closed.

Just some really bizarre stuff going on. I hope it is just anxiety, I just don't understand how that makes my muscles sore all day and all the other stuff I mentioned.

If you don't mind me asking....how old are you?

I've noticed that as I get older (I'm only 53 but there are days I feel 80 :rolleyes:) I have more aches and pains. Things just don't move as well as they used to.

I have MS so it's hard not to blame everything on MS but I can't do that. I'm just as apt to get other issues, too.

Autoimmune diseases will give you a broad range of symptoms. Hard to diagnose and usually done so by a series of eliminating other conditions.

Hope the meds work for you and you can relax and get some rest. I hate it when a doctor immediately chalks things up to anxiety but sometimes that's exactly what it is.

Let us know how you're getting along. :)

I am 28 years old.

I am deff noticing stiffness in areas when I do stress tests on muscles. I did the standing on one leg thing a couple days ago and now when I do it, it's harder to do, like the leg muscles I am using to do them are worn out from previously trying to do the stress test.

This is days ago that I did the test. And I didn't do it for a prolonged period that would warrant days and days of muscle fatigue in that area after.

I started taking Diazepam. I am told it was gonna make me feel relaxed and what not like an anxiety pill would do. I didn't really feel anything. Maybe today will yield different results.

Stiffness in hands today again, particularly the right, and clumsiness typing a bit. Altho that seems to be getting a little better as the hour goes on.

Do neuro symptoms come and go? In particular MS or ALS? Or does this sound like anything else? I am a little worried about lyme or something else. I know sometimes tests for lyme can come up with a false negative. I feel like I should get some more blood tests done to double up, but idk.

Generally, I can still do everything fine and I haven't had my mental fog in weeks. The only constant seems to be, if I use a muscle heavily, not to the degree of a workout, but if I use a muscle where I really gotta push it for a short amount of time, it will ache and feel fatigued for days. And usually everyday I have stiffness upon waking up which usually makes my morning typing pretty annoying.


I was eating breakfast this morning and I went to open the window next to me. I did it with my right arm. While the act of opening the window was not hard, I did have to put some muscle in to it because of how heavy the window is and the fact I was only using one arm. Nothing odd about it, I always have to put some extra muscle in when using one arm to open the window.

But right after I lifted the window up, my right arm started to feel very fatigued. I've done this so many times before and never did my arm feel as sore as it did today.

Thanks for all the support Kitty. I really do appreciate it.

There is a supplement called ribose powder. You can get this at iherb.com or Puritan's pride or Swanson's online. Using 5 grams a day to start sometimes gives a push to energy production in the cell's mitochondria. Just mix a measure into water, and take daily.
Start at night, as it might help you sleep too.

I'd get tested for B12 levels and make sure you have 400pg/ml as a lowest reading. (not lower). Low B12 impacts all sorts of metabolic functions. People who fix low B12 often have much more energy.

Low D also is common today so have that tested at the same time.

You have been tested for diabetes? I hope so, because weakness comes from disturbed glucose metabolism.

Diazepam will cause fatigue depending on the dose you use. Higher doses are more sedating.

Hi mrsD

Yea, along with lyme, I was tested for diabetes, celiac, and thyroid. All negative. I only had above average triglycerides and was told to eat healthier (I was stress eating for the past few weeks since getting worried about my issues). I am not sure if B12 was something they tested for, but the blood work sheet was filled with different blood tables. I'll bring it up next time I see my doc in 2 weeks.

I would be shocked if I had a vitamin D deficiency because I bought a bike at the beginning of summer and I've developed quite a farmers tan from taking my bike out for lunch rides everyday.

It is a 2mg Diazepam pill, I am to take 2 a day. I've taken 3 (over the course of the last day and a half) so far and I haven't felt anything.

You're very welcome. :)

I'm not sure about the dosage of the diazepam......MrsD would be the one to ask about that. She knows a lot about just about everything!

Yes, neurological symptoms do tend to come and go.....especially in MS.

Have you been tested for arthritis? Just from the symptoms you've listed it sounds like a vitamin deficiency or autoimmune issue.

Here's a link to the Vitamin forum. There's a lot of really good info on this forum especially about B12......http://neurotalk.psychcentral.com/forum49.html

I am not sure if the doctor tested for vitamin deficiency. I have sciatica, but my doc doesn't seem to think that should be affecting me to this degree. Especially both legs / upper body.

I have a question about ALS / MS, does the muscle weakness / fatigue start before visible atrophy? I did a strength test today. I did 3 squats. My legs were very fatigued afterwards. But my legs look fine.