Clarification

[Jmom]

I will be short and sweet out of respect.

Please excuse my misunderstandings or restated questions.

33 female. Starting in October:
Headaches
Virus
Spinal tap for meningitis
Chiro to treat headaches
In the midst of all of this I starting feeling a weird feeling in legs like they were going to give out.
Thought it was muscle relaxer for headaches and stopped taking.
Didn't fix
Went to neuro. By then it was mostly ache in calves. He did in office pins, walk in line, etc. sent me home to take calcium, magnesium, vitamin B.
Legs subsided and started getting weird surges through legs and arms(kinda like nervous feeling) and arms and legs would feel weak.
Burning tingling in left foot.
Went to neuro again, same in office check, then ordered brain MRI and emg and bloodwork.
Waiting on all the tests results and still waiting to have emg.

In the meantime, anxiety is terrible. So here's where I am.

All has subsided except my left leg feels weak like it is going to give out. It is unrelenting. I have burning in my hip and butt and some down the leg but my foot is better! No pain or burning. My calf is really giving me a hard time. It keeps twitching and aching. Also, this morning it was twitching like a heartbeat.

So, I am so scared a ALS causing this leg to feel so weak. It doesn't seem to be getting better. Also, I REALLY have read other post and stickies. But sometimes that makes the anxiety worse.

So what I am chewing on is I don't get with perceived weakness and clinical and onset of ALS: do you feel any weakness prior? If it were your calf couldn't you be weak in your calf as the muscle dies but other muscle make walking or standing on toes possible? Does clinical mean you just can't. I just don't know how to decipher through knowing what it would present like.

I am so scared of the weakness and constant twitching.

I don't really understand if you have any preceding symptoms to let you know ALS is there or if you just wake up and something is limp or inactive? Is there weakness you feel?

Advice, thoughts? Thank you truly for your advice.

 

[MaxEidswick]

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[Dusty7]

"All has subsided except my left leg feels weak like it is going to give out..."
Since ALS never gets better, your myriad other symptoms that have subsided clearly had nothing to do with ALS.

As Max says above in #6, "ALS is about failing, not feeling, so forget the 'feeling' symptoms."
Read that point again, then forget the feeling symptoms. Clinical weakness is weakness that your neuro can SEE in the CLINIC. Can your neuro see your leg feeling like it is going to give out? Can he see something that you ABSOLUTELY can't do, even if your life depended on it (stand on your toes, stand on one foot, climb stairs, etc.).

 

[Jmom]

Thank you both. I have read your post and tried to internalize what you have said and take a step back.

My anxiety is very heightened and having no test results and just waiting is making it difficult.

All my symptoms are gone but my left leg. The continuous twitching in that calf and weird feeling of weakness in my leg when walking has me "fitting the bill." Of your many visitors with worry.

I have read so many post but I have read where some if those diagnosed began with twitching and/or weakness; so this makes me more fearful.

For now, your advice and courage is much appreciated but I guess difinitively the answer lies in the EMG.

I wish I were twitching all over instead of one calf. That would spell anxiety more clearly; waiting is hard.

Thoughts and prayers and again thank you.

 

[Jmom]

So the neurologist can get the insurance approval worked out for EMG and I am still in waiting for everything.

I am more nervous as I discovered my left calf which is the leg bothering me; is 1/4" smaller than right. It is still twitching and the only thing twitching. My leg still feels weak and off balance. My calf aches like muscle tightness on and off.

I can stand on my toes, walk, hop, etc. it doesn't feel normal but it is possible.

This is what I think: the twitching is scary and can be a symptom. My right calf is bigger. When I flex it I can feel areas that are pronounced and moving. The left is not that way. Smaller and some areas just don't move when I try to flex them.

I don't know why. I am scared part f the calf muscle may be dying; causing this weakness and twitching.

That is why I am so scared of it being ALS.

I know it isn't your place to have to adress my fears, but I do truly appreciate your thoughts and advice based on experience.

I truly don't now is this sound like a concern or just silly.

 

[Jmom]

Any thoughts about this constant twitching in my left calf? I am so worried.

 

[Gembead]

I have a calf muscle that twitches and cramps but mine are related to a bulging disc in my back, not ALS or MND, many things can cause muscles to twitch like a vitamin deficiency .
Love Gem

 

[Jmom]

Can part of the calf die allowing you to still stand on toe, walk, hop, etc.? But not all? Can thAt happen?

 

[Nuts]

Yes, some of the muscles can die before others, leaving a limb weak before it fails. A myriad of things other than ALS can also cause atrophy in one leg. I hate to answer you because are really working yourself up rather than waiting to let the neuro do his work. You've been told that your symptoms don't sound like ALS, but you seem determined to find an answer that will feed your fears. If you chose to read my response that way, then you have the answer you are looking for. Again, you've been advised to let this go, but if you prefer to worry yourself sick until you see the neuro that is, of course, your decision. By the way, there is nothing short or respectful about coming back over and over again insisting on the answer that you didn't get the first or second time. It makes us crazy. I would give both arms to trade my husband's health for yours, as would any CALS here. We've held your hand, now we need to hold each others. Best of luck in finding what is really wrong with you.

 

[affected]

Jmom, Max and Dusty have answered you carefully.

I've also read all your posts over carefully and assure you that nothing you say sounds like ALS. While you work with your doctors please use a BFS or health anxiety forum to discuss your concerns more appropriately. The walk on toes and heels test is a very important one, but self testing is a waste of your time and only heightening your anxiety.

If you have an EMG and a diagnosis then please do come back here, otherwise remaining here is only going to make your anxiety worse. No need to reply here, and I wish you the best in working with your doctors to get your health issues solved.

 

[Clearwater AL]

Jmom, as you wrote, ("All has subsided except my left leg feels weak like it is going to give out. It is unrelenting. I have burning in my hip and butt and some down the leg but my foot is better! No pain or burning. My calf is really giving me a hard time. It keeps twitching and aching.")

Now, If you'll spend the same amount of time you have researching ALS - searching symptoms caused from the spine you find you have a spinal problem... not ALS or any MND.

Your posts following your first one have shifted from aches, pain, burning and tingling, which points away from ALS 100%, to posts that are evident you're trying (subconsciously) to convince yourself and us you probably will be joining the sub-Forum "Newly Diagnosed."

Finally, as you wrote, ("All my symptoms are gone but my left leg. The continuous twitching in that calf and weird feeling of weakness in my leg when walking has me "fitting the bill.")

Maybe the doctor's "bill" but not the one your anxiety has you thinking it is.

 

[Jmom]

Emg

Ok. So I have stayed away because I don't want to upset anyone who is trying to help.

I did have the NCS/EMG done and the results were as follows:

Lower left leg: normal NCS/EMG

Upper right arm: Ins ACT Increase and +1 FIB (spontaneous act) in the ABUCT.POLL. BREV C8, T, Median

Impression: Abnormal electromyography of the right upper extremity suggestive of carpal tunnel syndrome. Clinical Correlation recommended.

So, I understand it is suggestive of carpal tunnel, but of course having health anxiety, I FREAKED OUT that it was abnormal at all. Especially since my lower left leg has been hurting so bad and twitching non-stop. My calf muscles have been aching and having weird burning/pin poke feelings, so I thought for sure the EMG would show something with my leg and it didn't.

My arm was fine (with the exception of waking up with either my outer 2 fingers (pinky, ring) number or inner 3 (thumb, pointer, index) numb from time to time. This wasn't a big concern, i figured it was how I sleep.

I don't want to sound silly, I really don't but I have been so scared. All the neuro said was it was an irritated nerve and gave me an anti-inflammatory. I read the report to learn the CTS part. SO, what does all this mean? My mind is swirling:

Can the neuro tell the difference between ALS and Carpal definitively on the EMG test?

Is this an accurate way to diagnose CTS?

Could it be something else?

I thought fibs were really bad? Are they really bad?

The anti-inflammatory isn't doing anything for any of the pain in my leg or the twitching. Today I actually saw a twitch in the muscle by my thumb so my mind is going crazy. Could it be ALS and it is getting worse.

I just need some advice please. The neuro was very dry and said nothing about what to do with my leg hurting and twitching or what it could be. Said nothing about a plan other than to come back in 3 weeks. Said nothing about the EMG other than it was "nerve irritation."

Thanks Sincerely.

I am seeking anxiety meds and seeing my therapist, so if I sound like I am an issue I am trying to do everything to do the right thing.

 

[Nuts]

Yes, the Neuro can definately tell the difference between CTS and ALS. The same doc, a leading expert on ALS, did EMGs on both my husband and myself. He has ALS and I have CTS. No question. Yes, this is an accurate way to diagose CTS. The anti-inflammatories are for you CTS. The twitching is probably a whole other nerve(ous) problem--sounds like a job for your therapist. When you return to the neuro by all means ask him about your leg, but it could be something else entirely. Have you asked your GP? Calm down--you've been given great news and should be celebrating, not panicing.

Did you ask your neuro about the burning and pain in your leg when he didn't offer any info? Did he check your back? You may have something in addition to CTS going on, but as you were assured before, it does not sound llike ALS. Please let it go. This is a horrific disease and you are trying to talk yourself into it. Anyone here would exchange their health or that of their PALS with you in a heartbeat, so we do tend to get a bit short when people continue to try to convince us and themselves that they have ALS when they don't. Relax and rejoice, you are going to live.

 

[Dusty7]

ALS is a disease of widespread, acute and chronic denervation. Your EMG shows "Abnormal electromyography of the right upper extremity suggestive of carpal tunnel syndrome."Your denervation is not widespread and I would say it is not indicative of ALS. CTS or a radiculopathy, possibly, but I don't see ALS.

 

[affected]

oh hold me back ...