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mustang22

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Hi, everyone. I'm needing some questions answered, and maybe you can help. The stress from overthinking is taking a toll on me.

I'm in my mid-thirties, female, and have been (until the last year) a very healthy, happy, active individual.

Last Winter I had a nasty upper respiratory infection that led to a sinus infection that wouldn't go away. I developed awful headaches with lightheadedness, and started having a burning pain in my arm. Both of my legs have felt "funny" since March - I'm not weak, but my legs (and sometimes arms) ache. Then, I developed tingling in arm which evolved to tingling everywhere. Sometimes when I sleep the tingling is especially bad in both arms. The burning/discomfort in my arm(s) is there most of the time now. My left hand aches a lot.

The reason I've come here is because my most recent issue is twitching (especially in left leg and left arm, but anywhere, really). I had a normal EMG (said one area in legs was 4.6 and a little low for my age -should have been about 5?-, but could have been because of a cold room?), but it was about a week before the twitching started. Does that matter?
I've had:
brain/cervical spine/thoracic spine mri's
brain/cervical mra
EMG
Spinal tap
lots and lots of blood work

All tests have been normal.

My neurologist tells me it might be some type of neuropathy, but no real ideas what's going on.

My biggest problem right now is fear. I was worried for months about MS, but I've been told if it is that, then it's very, very early stages. I'd have to wait until more develops to know. Now, with the twitching, I'm afraid of ALS.

Questions:
Does this sound anything like ALS to anyone?
Does "weakness" have to mean no little strength? My body (esp. arms/legs) just feel different. . .

Can anyone give me anywhere to go with this? I'm driving myself and my family crazy. My body really feels like it's turning on me. . .

Thanks for any advice you have.
 

BethU

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Hi, Mustamg ... No, this doesn't sound like ALS to me. Tingling and burning sensations are not characteristic of ALS.

As to discovering fasics after an EMG ... this does not change the findings of the EMG. If you had ALS developing, the EMG would have picked it up. My neuro told me that denervations detectable by EMGs occur months before any visible or perceived symptoms appear, so if your EMG was clean, that is good news!

By the way, benign twitches are VERY common, and often show up when people are anxious, so these could be in response to your concern about your other symptoms.

Good luck. I hope you find an answer quickly. The uncertainty can drive you up the wall.
 

joelc

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Try to find a good Chiropractor &/or a good Naturopath.

They both have helped me a lot in the past.

From what you said find a Chiropractor first and see what results you experience, then a naturopath.
 

broodjeaapspeciaal

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Benign twitches are usually caused by anxiety in some way.. allot of people over at anxietycentre have it as a symptom. Tingling and burning sensations is not consistent with ALS, because ALS attacks the muscle neurons, not the sensory neurons. Anxiety can cause these symptoms aswell.


Lyme can mimic allot of symptoms from other diseases; including MS, fibromyalgia, and in rare cases ALS because of local muscle weakness. Just get yourself tested for lyme to be sure.

And yes, lyme can also cause muscle twitches. Some people get false negatives after a bloodtest, because its hard to detect.

Good luck!
 

Zaphoon

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Mustang,

I second Beth and the others. Sensory nerves are not usually affected with ALS; just motor nerves. Pain, pins and needles, tingling are associated with a whole host of other things (as well as twitches) and most are very treatable.

Hang in there and rest easy. Let the doctors do the diagnosing and you will breathe a lot easier in doing so. ALS is rare and odds are pretty good you don't have it.

Zaphoon
 

mustang22

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ALS questions (again!)

Well, I can only say you guys are awesome. Just taking the time to respond to my concerns makes my heart feel good. Thank you so much.

Another question: I told my friend my emg was "normal," and she said that since it was in a cold room it may be invalid. The neurologist who performed the test said the mildly low numbers on two places on my legs were probably caused by that (I think he said they were something like 4.6 and for my age should have been more like 5?). He said my results, otherwise, were great, and that we could wait a year to test again if I am still having issues.

What do you guys know about emg results? I thought my results were fine until my friend told me my temp. should have been checked, etc.

I don't tingle nearly as much anymore, but I do have twitches all day (mostly legs/feet and arms/hands). It's good to know tingling isn't typically associated with ALS, but my persistent FEELING of weakness is bothersome. My thigh and bicep muscles always feel like I've been lifting weights? What about electric shocks? I get those once in a while and they really startle me!

Blessings to all of you in your personal journies. . .
 

planningguy

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mustang22,

That is an interesting question regarding the EMG. Hopefully, one of our knowledgeable posters can comment on it.

How cold was the room? I find examining rooms (paricularly in hospitals) tend to be a bit nippy anyway, and for my EMG I was wearing a gown which we all know tend to be "drafty." I guess the real reason I am curios is that the neuro at the University of Utah iced down my hand prior to conducting the EMG there, stating that it made it a little easier to tolerate the discomfort (though there may have been other reasons too).


Robert
 

awieleba

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I "may" actually know an answer!

the tempture that they are referring to is the ncv part of the exam. when I had my emg/ncv (done together) they had to warm my feet and hands with a lamp because the said the ncv part was sensitive to cold. I dont think it effects emg, I could be wrong. What you are descibing as results sound like ncv findings not emg.

good luck, and Yeah me if I knew something that helped anyone!
 

mustang22

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That makes sense. . .

Well, I don't actually know which part of the test it was now that you mention it. I just remember the 4.6 and 5 he mentioned. So, those numbers look like ncv, huh?

I always hear people talk about emg - so what is ncv testing? It's different from the emg number? I'm confused (but that's nothing new!)
 

awieleba

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Yes, the ncv is for your nerve conduction. The emg is for your muscle.
 

planningguy

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April - That's what I was thinking, but I wasn't sure. This is far from my territory.

mustang22 - NCV refers to "nerve conduction velocity." It is a measurement taken as part of a nerve conduction study. Beyond that you'll have to ask someone with more knowledge than me. This portion of the exam would have been where electrodes were attached to different parts of your limbs and then a small electric shock given. The EMG is where needles are inserted into muscle groups.

Robert
 

wright

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Mustang

A cold room can affect the nerve condition study but if they did both sides of your body, they can certainly compare and see if the values are consistent. Having said that, it would have to be pretty darn cold in there to have large effects and I'm sure the neuro that did the exam was aware of it.

The EMG is not affected by temperature at all, except maybe the measure of fasciculations to a very small degree . . . but nothing that is going to change the results of the test.

I'm not sure where your friend got her information but never believe everything you hear.

Chiming-in on your symptoms

I agree with everyone else . . . INCLUDING YOUR NEURO . . . that it doesn't sound at all like ALS and the tests you have had confirm that. Relax and let your docs figure-out what is wrong.
 

dsiple

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Just a suggestion

Find a reputable doctor that knows something about Lyme disease and get tested. I had Lyme before this had even thought about starting, save yourself the aggravation of worrying about ALS, get tested for Lyme.

Good luck
Duane
 

mustang22

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I did get tested for Lyme via the spinal tap and other bloodwork. It has come back negative - everything has.

I saw my neurologist today because the twitching has gotten worse, and last night both of the backs of my knees were twitching badly - so much so that it woke me up in a panic attack.
Rose, like you, he reminded me that my EMG was normal. He pretty much ruled out the ALS for now, but has no idea why I am now twitching when for the last several months my symptoms have been sensory. He said we've now opened the "muscular" door. Great. He also said he's about out of tests and that I need to go to a comprehensive center. I can't go to Mayo - my insurance won't allow it.

Any ideas on the (1) sensory AND muscle symptoms, and (2) a good comprehensive center (not Mayo)?

Thanks for your support and kindness on this forum.

Mustang
 

rose

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Mustang,

Here are some resources the MDA lists for the Dallas area...

Neurological Clinic of Texas
Director:
Susan E. Hotz, M.D.

University of Texas Health/SW
Medical Center
Co-directors:
Sharon Nations, M.D.
Jeffrey L. Elliott, M.D.*
Gil I. Wolfe, M.D.

Texas Neurology, P.A.
Director:
Daragh Heitzman, M.D.

MDA/ALS Center
University of Texas/Southwestern
Medical Center

Unfortunately they didn't list phone numbers, but maybe you can find which facilities are in network for you, and then have your physician handle getting you the referral into one. Even if your insurance doesn't require a referral, these centers usually do, for you to be seen there.

About your NCV and being cold, they had to put a heat lamp over me to warm me up, and assured me that the initial slow reading was completely normal because I was cold. When I was warmed, it was all fine.

I've read that sometimes blood work has to be repeated several times, and Lyme is known to still not show. Good luck! Let us know what you are able to find out.
 
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