Old 08-03-2008, 11:14 PM #1 (permalink)
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Question Nonstop Internal Tremors/Shaking

Does anyone else have nonstop internal shaking/tremors? I feel like my entire body is hooked up to a vibrating bed all day long. This has been nonstop since June 10th (and was the final symptom to lead me to believe I have ALS). If anyone else has this symptom, is there anything you have tried to reduce/eliminate them? I'm hoping there's a vitamin or herbal remedy out there somewhere that may help. I sometimes shake so badly inside that I feel dizzy, and it is getting more and more difficult to fall asleep at night.
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Old 08-04-2008, 08:03 AM #2 (permalink)
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I hope you don't have ALS. When someone else touches you do they feel it even though it's not visible? I mean to place the hands flat against the skin in the area you feel it.
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Old 08-04-2008, 01:13 PM #3 (permalink)
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I just get them in my chest area not my whole body and not all the time...I am not diagnoseded.
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Old 08-04-2008, 03:07 PM #4 (permalink)
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I have this a lot. It helps to be well rested. And I try to support my trunk as much as possible. I kind of recline back as often as I can, as this lessens the tremors.
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Old 08-04-2008, 06:06 PM #5 (permalink)
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I just wanted to chime in because I have been experiencing internal vibration as well, mainly in my trunk and legs.

In the reading I have done, it seems that it is a sensory symptom that some suffering from ALS experience and comment on, but has also been mentioned by sufferers of a number of other nervous system dissorders including MS, parkinsons (I found an interesting study that focuses soley on sensary sensation of vibration in parkinson's as oppossed to visible tremors), auto-immune conditions, general neuropathy, etc.

So I guess my comment is that if the question is can someone with ALS feel this internal vibration, then yes, including responses to this thread I have read of some with ALS experiencing this symptom. The caveat would be that it doesn't seem very exclusive to ALS.

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Old 08-04-2008, 07:04 PM #6 (permalink)
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Hi Mommi~

I get these mainly in my left leg (the problem one) at night when resting. Or if I am leaning a particular way I get a visable shake on my thighs.

BUT, 9 years ago I got horrible tremors that you could not see. It felt like my legs were resting on top of a computer or something with the vibrating. I went to the neuro and had a mri. long story short, they mis-diagnosed me with ms. I had been on ortho-tricylene and when I stopped taking it, all the vibrations went away soon. My girlfriend had the same reaction to it. My theory was the hormones/estrogen. are you on anything like that? You did have a baby recently, maybe it is your hormones.

take care!

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Old 08-04-2008, 07:15 PM #7 (permalink)
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April- How long were you on the ortho-tricylene before this happened?

Mommi- when I did a google search on internal tremors-What came up was a forum with women saying thank god they found other people experiencing this and all the answers they received from drs was it was probably their hormones. Also I did read the same thing as "planningguy" about parkinsons.
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Old 08-04-2008, 08:40 PM #8 (permalink)
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Hi ... I'll chime in, too, just for the record. I don't have any solutions. But I had this same experience in January ... violent internal shaking, it seemed in my whole body. I went running to the doctor as an emergency patient, and the doctor decided it was my thyroid (which it was not), and cut back on my thyroid supplement (I'm still fussing with her trying to get the proper dosage restored). The shakes had stopped by the time I got into the exam room. The whole episode lasted about 3-4 hours.

I had just gotten out of the hospital a week before, and my hunch is that it was connected to being really stressed and debilitated from three weeks in the hospital, along with the underlying neuro problems. (This was before I had been diagnosed with either MG or ALS, so the doctor was not thinking neurological.)

I recently (in the last week) had a milder version in my chest and arms along with an alarming shortness of breath, which woke me up in the middle of the night. This episode did not last long, fortunately. I think the recent episode was what some people on the forum described as a "purring" feeling.

Hope this is easing up for you, Mommi. The violent shakes were very distressing, and I can imagine they make sleep very difficult.
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P.S. I'm 72, so I know it wasn't my hormones!
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Old 08-04-2008, 11:27 PM #9 (permalink)
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I'm going to think twice before picking a forum name again. That and start bolding my signatures

Robert
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Old 08-05-2008, 08:50 AM #10 (permalink)
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Robert,

I sorry I didn't mean to offend you, I was in a rush and couldn't remember your real name....
I just remembered your forum name and didn't even have the energy to scroll back up in the post
to see your signature name.
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Old 08-05-2008, 10:44 PM #11 (permalink)
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Everyone, thank you for your responses...I appreciate all the information and kind words. I'm so sorry we all have to deal with this and I want you each to know you are in my thoughts and prayers.

Some more information:
The tremors run throughout my whole body, not in one spot. It feels like I'm hooked up to electrodes. There's not a single spot where I don't have this sensation. I also have sporadic "buzzing" sensations throughout my body, but these are brief - about 5-10 seconds- then go away (these usually happen in my ankles, thighs, abdomen and scalp). The internal tremors NEVER go away. My husband has tried to feel them, but feels nothing when he touches me with his palm and/or his fist. However, sometimes they are bad enough to visibly see, and it just looks like I'm shaking because I'm nervous. To the onlooker, the shaking is very minor. However, to me it feels like I'm shaking apart inside- to the point that if I put my teeth together I'd swear they would chatter.

I have hypothyroidism and my GP just checked my levels and everything was perfect. I've had a hysterectomy and take a small Progesterone replacement just to fend off the occassional hot flashes. My OBGYN and I have been working to wean me off the hormone replacement therapy completely and I'm down to 1/2 tab every 4-5 days.

I would LOVE to believe the tremors are attributed to either of these conditions, but I'm also having problems with my speech (thick tongue), excess fatigue, loss of strength in my shoulders and neck, muscle fascilations, and in the last week I am beginning to have a constant "frog in my throat" and constantly feeling like my chest and throat are full of phlegm.

I've read about other members having the fascilations but have not read of anyone with the constant, non-stop tremors. I am worried that I may be progressing faster than most and just want to be prepared.

This disease is so darn frustrating because everyone is different and there are no real patterns to gauge where you are in the progression. I have not told my parents yet and thought I'd wait until I get an official diagnosis (my grandmother died of ALS and I don't know what this will do to my mom). However, it seems a diagnosis is not a quick thing to come by, so now I don't know what to do. I'm praying about it, but haven't gotten a clear answer yet.

Love to you all,
Mommi
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Old 08-06-2008, 05:00 PM #12 (permalink)
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mommi~

you mentioned that you were on and are tapering the hormones, I really feel that is the cause for tremors/buzzing. I dont know about your other symptoms. I am telling you I had this 9 years ago and it was bad. does not sound as bad as you desribe but none the less it sent me to th neuro.

I was on the hormones for about 6 months (maybe, cant remember). My doc thought ms, it was my holestic doc I saw (after they told me ms), he told me to stop taking the pill. it took a few months and all the buzzing stopped. and my friend had the same thing. I really think this is from your hormone supplement. Hang in there and get off the hormones and I think it will pass.

Are you seeing a neuro?

april
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Old 11-18-2009, 12:59 PM #13 (permalink)
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Default Re: Nonstop Internal Tremors/Shaking

I have had this condition since February 2009. I noticed this very disturbing condition after I was released from the hospital after having a blood transfusion. I tried to communicate to my doctor what was going on but she never understood fully what I was going through. Now nine months later I am still experiencing tremors throughout my entire body. I am guessing from the responses of most post that it may be related to stress or some kind of nervous system issue. I had (in February) been under a tremendous amount of stress. I have since learned to de-stress my life. Thank God! Also, my doctor did have the thought that it my also be related to peri-menopause. I'm curious if this thing will ever go away. I always feel like I have a machine hooked up to my body. Weird!
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