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Old 07-08-2013, 10:09 PM   #1 (permalink)
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Default Twitches everywhere, weak arms - Help!

I made a post this morning, but for some reason it didn't post. I'll just rewrite it and shorten it up a bit.

I am a 38 year old married woman with an 11 year old daughter and 13 year old son. I live in Utah. 2 months ago, I started having weakness in my left arm. Actually, I felt the weakness in both arms, but it was more in my left than right. It bothered me for a few days and I ended up complaining about it to my husband. I told him that "something wasn't right with my arms, they were so weak and my fingertips kept feeling a little tingly". I felt like I was clumsy and they felt heavy and sluggish.

I ignored it for a few weeks and it seemed to not bother me as much. Then one day, about a month ago the weakness came back. The same day, I started having twitching in my left arm, on the outside above the elbow. It twitched like every 30 seconds for 2 days. I went to my regular doctor on the second day. I had a tugging sensation along the outside so he suspected an ulnar problem and sent me to a neurologist for an emg/ncs. I went home later that day and googled "arm weakness and twitching". That was the day my intense anxiety and fear began because of the results I read on google. On the 3rd day, the twitching moved to everywhere in my body. I twitch in my calf, then foot, then shoulder, then stomach, then back, then arm, etc, etc on both sides of my body. Pretty much everywhere... except my teeth.

I have seen 3 neurologists - 2 regular ones and 1 one als specialist. The als specialist did some strength tests and said I didn't have als. She had me hold my arms up and pushed down on them, had me spread my fingers, etc. She said I was wrong. She did, however, say that my reflexes are brisk and said I had a positive hoffman's on my right hand. For whatever reason, she refused to do the emg on me. I called them back today to ask about getting the emg and they told me als has been ruled out and that I would need to get a new referral from my regular doctor if I wanted one. The other neurologist did the ncs, which turned out normal, but wouldn't do the emg either. I don't understand why they refuse to do the emg when I'm having all these symptoms!

I had a brain mri which showed very small lesions on my frontal lobe (round less than 2 mm). They are atypical of ms (in size and location) and the radiologist and neurologist both thought they could be from migraines or mini strokes. I don't know if that's even related, but my thinking and memory is somewhat impaired for the past couple of months. I am going to have a spine mri to check for more lesions, but I don't think I have ms. I'm worried about als. I don't think body wide twitching is a symptom of ms. Cramps and spasms are, but not twitches.

I am now starting to think I can see a small dent in between the knuckles on my pink and ring finger. I can still lift things fine. When I was in Walmart today, I went to the exercise area and lifted up a 25 lb weight with that hand.

I'm still having the arm weakness and sluggish feeling in my hands, although it feels like it's bothering me more in my right hand/arm than the left. Sometimes my legs feel weak and so does my breathing. With the arm weakness, all over body twitching, brisk reflexes, positive hoffman's I am so scared, worried, and paranoid about als. I have been having severe anxiety and depression because of it. I can cry over anything which is not normal for me. Can weakness present in both arms at the same time? Would the weakness start in one hand/arm, then move over to the other hand after a couple of weeks? I would appreciate any advice or thoughts from any of you. Thank you.

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Old 07-08-2013, 10:12 PM   #2 (permalink)
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Default Re: Twitches everywhere, weak arms - Help!

Sorry, I meant to say... "She said I was strong", not wrong.
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Old 07-08-2013, 10:14 PM   #3 (permalink)
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Default Re: Twitches everywhere, weak arms - Help!

Why wouldn't they do an EMG? That makes no sense. I would find a new neurologist.
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Old 07-08-2013, 10:37 PM   #4 (permalink)
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Default Re: Twitches everywhere, weak arms - Help!

I don't know. I called her back today to ask if I could just come back in and get it done since I was supposed to get it done last week, but they said no. The receptionist said, "Dr Gibson has ruled out als so if your symptoms persist you will need to go back to your doctor and get a new referral with an emg order". Well, the first order that my doctor sent to them had the emg on it. And they are supposedly the best als neurologist in all of Utah. The general neuro I went to in Provo wouldn't do it because she wanted me to go up to see the als neuro in SLC. She did the nerve test, then when she heard I was worried about als, she stopped and said I needed to go see them because they could rule it out right away. Well, they did rule it out, but not with an emg!
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Old 07-08-2013, 10:40 PM   #5 (permalink)
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Default Re: Twitches everywhere, weak arms - Help!

I am sorry you are having such a problem. I think you should listen to the drs. they know more than we do. I don't understand why you are fixated on als. What you are describing doesn't sound like als to me. go to the dr and listen to what they are telling you. You have done a internet search and are trying to convince yourself you have als.

You have seen 3 neuros and all have said the same thing. they have more education than we do. I don't have als but I struggle to lift a gallon of milk let alone 25 lbs. Not saying you don't have something wrong but you need to keep on open mind, there are all kinds of things this could be.
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Old 07-08-2013, 10:48 PM   #6 (permalink)
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Default Re: Twitches everywhere, weak arms - Help!

The doctors ( 3 neuros?) didn't order an EMG because it's not warranted. You do not have ALS. NO - weakness does not typically move about the body so quickly. You are not weak lifting 25lbs. ( I can't lift a toothbrush these days - too heavy).

My question to the neuro would not be for more testing - it would be "Doctor, in your opinion, what is causing my symptoms?".

Fact that the MRI had an unremarkable result ( if it was remarkable, trust me, the doctors would tell you) and that you then started with the muddled thinking, similar to a stroke victim's, one must wonder if it's not hypochondria. Ditto for the twitching. It seems to me, you develop symptoms after reading about them. Similar to first year med students often do.

So, all that I can think of, is to suggest to you that you are indeed healthy. Research good health. Google it. Devote hours and hours thinking about it. You may just develop it.
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Old 07-09-2013, 12:01 AM   #7 (permalink)
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Default Re: Twitches everywhere, weak arms - Help!

@goolia75:

You've already got very good advice by very good people here.
Just quit worrying and try to enjoy your life the best way you can.
Anxiety is not good and may cause you more harm than good.

Take care.


Carlos
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Old 07-09-2013, 12:22 AM   #8 (permalink)
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Default Re: Twitches everywhere, weak arms - Help!

Thank you everyone for your replies and for taking the time reading my post. I was diagnosed with SCDS (superior canal dehiscence syndrome - a rare inner ear disorder that causes a lot of bad symptoms) right before this all started. It took me several months to get the diagnosis and has been very stressful (constant high pitched tinnitus that never goes away is mentally challenging after a while). I have wondered in the back of my mind if a lot of this may have been due to some of the anxiety I had from waiting for the SCDS diagnosis. Several doctors told me I was fine and not to worry. I was persistent and eventually did find out there was a problem on a ct scan.

Do the hyperreflexes and positive hoffman's not mean much as far as als? I know they can indicate other issues. My sis in law has ms and she has very hyperreflexes and has a positive babinski reflex. A doctor told me a few years ago that I was hyperreflexic when he used the hammer on my knees. I had weakness out of the blue before I had the twitching and I didn't know anything about als until after the twitching started. I do think becoming paranoid that I can't breath sometimes or that my legs are weak or my speech is slurring could be in my head. I could be wrong, but I don't think all those things would happen all at once, within days or weeks of each other.

Right when I started having problems with my ear, I also thought I was having heart issues. I wore a heart monitor for 2 weeks, had an EKG, echo, etc because of heart palpitations. Maybe much of this is coming from health anxiety. I have worried that I was having a blood clot in my leg before and even an aneurysm in my chest.

Thank you again to those who have responded with their opinions. I'm sorry to anyone who has to deal with such a horrible disease in their life.
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Old 07-09-2013, 07:12 AM   #9 (permalink)
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Default Re: Twitches everywhere, weak arms - Help!

I worried about als for 3 years - had weakness and twitching- I was so distressed they told me to see a shrink who gave me various drugs to convince me that I wasn't ill. I was ill I have mitochondrial disease. But my als worrying did me no good - Infact the drugs they gave me are bad for mito . I guess im saying the worry will only make it worse and it will be what it will be. Don't do what I did it literally made things worse best wishes mags
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Old 07-09-2013, 12:09 PM   #10 (permalink)
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Default Re: Twitches everywhere, weak arms - Help!

Hi goolia75,
I can relate to your post. If you read some of my pervious threads you will see
We have some simularities.
The Nueuromuscular doctor I see does not want any more emg's on me until I show clinical weakness.
I've been tested and i do not have Als or pls.
I know it's not easy but hang in there. Aniexty can cause many symptoms
in our bodies too. If your symptoms get worse go back to your doctor.
All my best to you.
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