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Old 03-29-2011, 03:28 PM   #1 (permalink)
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Default Normal EMGS- and weakness/tightness/pain

Hello, I'm new here, 34 year old female. 6 months ago I developed weakness/tightness in my arms/hands/legs/calves/hips, clumsy fumbly hands, tightness, stiffness throughout my limbs and neck/jaws. My legs don't seem to be moving right and my leg muscles feel like they're stretched tight. Twitching throughout my whole body, many in limbs. I had one EMG(left arm/leg) 2 months after I felt these symptoms and then another EMG 2 months later. They were done by 2 different neurologists: the first one did 5 needles on the arm and 5 needles on the leg and seemed very thorough. The second was done at a neuro-musc/als center, but the neurologist that did it (right arm/leg this time) didn't do as many needles as the first neurologist, and seemed not to take me seriously from the onset, which makes me uneasy. Both EMGS were said to be normal. But I don't feel normal The twitching and weakness/stiffness continues and I want to be taken seriously that I really do feel this.

If I already felt some weakness/twitching on the first EMG and continued weakness/twitching at the 2nd EMG, would these EMGS have shown something wrong? I have been so scared these last 6 months, my life is not the same and I don't know what to do or think anymore, because something doesn't feel right.

My CBC/metabolic panel/ANA/Lyme/Syphilis/CPK/RA/Thyroid/D-1,25, Brain/cervical mri, all normal. D-25 was 18 & is up to 30 now. What do I do now, other tests, who do I see, should I go get another EMG at a certain junction in time?

Please help anyone, I am in despair, I need to know about the reliability of EMGS, there is nothing worse than not knowing what is happening, what is true of EMGS, please help...

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Old 03-29-2011, 03:40 PM   #2 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

Hello Meli

EMG's in the hands of well-trained neuro's are very reliable. Therefore, if two different neuro's got the same results, then you can be rest assured that the results are valid. Furthermore, given the time frame of your symptoms, the EMG was not done too early.

The symptoms you describe (except for the twitches but everyone twitches . . . some people simply more than others and some notice them more than others) are not really lower motor neuron-type symptoms. That means an EMG would not detect the problem. Your symptoms sound more like upper motor neuron-type symptoms. I'm certainly not saying that you have upper motor neuron dysfunction, because your symptoms could be due to a slew of different things.

Your symptoms, which have spread through-out your body in a matter of months, points away from any type of MND. That simply isn't how they work.

Right now, given that there have been many tests run on you that have all been normal, my guess is that your docs have indicated to you that they would like to wait and see what happens. Unfortunately, that might very well be what you have to do.

Are your symptoms getting any worse? Do they wax and wane? Was there anything that happened shortly before your symptoms surfaced (e.g. an illness)? You also indicate in the title of this thread that you are suffering from pain. What kind of pain is it?
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Old 03-29-2011, 03:58 PM   #3 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

What have your doctors suggested as a cause for your symptoms? I presume that they each verified some of your symptoms during their clinical examination; else, they wouldn't have ordered or performed the EMGs. Have either of them suggested followup visits in the future? Have they referred you to other specialists?

EMGs, combined with appropriate clinical examinations and testing are very effective for diagnosing certain neurological and neuromuscular conditions, ALS being among them. A normal EMG generally means that you don't have ALS. It doesn't mean that there is nothing wrong with you. It simply indicates that you shouldn't worry about ALS being the cause of those symptoms.
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Old 03-29-2011, 04:13 PM   #4 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

The drs have not suggested anything, they say they don't know, that they have run all the tests(not true) and all are normal, therefore, they suggest seeing a psychiatrist. I disagree, and feel disgusted at their attitude and lack of sympathy and direction. They say I have no "objective" weakness, but how much does this really mean when my subjective weakness is getting in the way of living normally? One suggested follow-up just to comfort me that I don't have anything terminal (he was dismissive from the onset and he works at a neuro-musc. center, lacking feeling, and sarcastic demeanor). The other neuro said that if I want, she can continue to follow me (really pathetic). Neither have referred me to other specialists, nor suggested exploring, other than pushing the Psych., they both work for the same hospital system, & know each other. I don't know what to do, I know something is wrong, any advice is appreciated. What else could it be...
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Old 03-29-2011, 04:22 PM   #5 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

hi, pain radiating in neck,shoulders, into arms, and low back radiating into hips, upper legs. My pelvis/legs feel wobbly when I walk, unstable, and I feel like I will fall backwards(and will) if I let myself go whether standing or walking. When I squat, my thighs/calves/ankles begin to move outward, like my muscles are not holding my legs/knees together and I will fall back on my behind; my knees feel the stress too. Don't recall any illness before it happened, just a long hike 2 weeks prior. I keep repeating myself to the neuros, and it's like they aren't hearing me. I was pushing for a lumbar mri, because it's the only other thing that could explain lower muscle weakness, they would not let me get one. I will be seeing a lower spine specialist soon, perhaps I'll get a lumbar soon? Any help/advice is appreciated...
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Old 03-29-2011, 04:37 PM   #6 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

If they pushed you to go to a psychiatrist, you should go. The WORST thing that could happen is the psych believes your symptoms aren't psychogenic (from the mind, not unreal, just from the mind), and you can go back to the nicer neuro with a letter of clean mental health and get better followup. But maybe they are, and subjective weakness very well could be... caught early, psychs can help with that kind of thing.

Subjective weakness must certainly be frustrating, but it's just not motor neuron disease. For us it is much the opposite - we feel stronger than we are, and assume our failures are caused by outside actors. We trip over invisible bump, have suddenly poorly cut keys, etc. We don't feel weak, we test at the doctor as weak. You are opposite of that, which is great news, because MND sucks!
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Old 03-29-2011, 05:05 PM   #7 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

hi, what do you mean you don't feel weak? How is subjective not MND, weakness felt has affected the way I walk, and do things, for example, just picking up a couple magazines feels tiring to my arms/hands?

Another example, going up and down stairs my legs feel wobbly,like jello, and my grasp feels clumsy/weak when I pick up things (things feel heavier). Also, my legs/hands have been feeling clumsy in general, like the ground under my feet doesn't feel solid and it feels like my hands aren't holding /grasping things "normal", just feels awkward.
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Old 03-29-2011, 05:09 PM   #8 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

Meli. I really sympathise. Unfortunately, the wait and see plan of treatment is common in neurological conditions. I was told once by a wise Neuro psychologist, that "they can take years to show themselves". On the other hand symptoms like yours can just as easily slowly dissappear. Viruses can certainly cause your type of fatigue and pain. Its hard to be patient when you are scared, therefore try not to research symptoms, it makes things much, much worse. You really need to just get on getting on! Do as much as you can. Keep as fit as possible, and return to your Neurologist only if things get markedly worse.

I had subjective weakness, long before it eventually got so bad that it was found on Clinical examination. We detect irregularities sometimes way before anything is obvious clinically, as its actually very minor. Especially when our walking is involved. So be patient, You do not have ALS as stated already, so rejoice.

Best wishes
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Old 03-29-2011, 05:21 PM   #9 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

thank you alyoop.
I'm hurting so much, as is my family, watching me struggle with uncertainty. I want to believe it's not the worst thing, but it's so hard; you say neurological things can come and go, and viruses can cause things like this to come and go, without any "objective" clinical manifestations when the neuros do the tests, even with feeling real weakness within my limbs? So I should just wait till something worse presents, as things can take years to show themselves fully? How can I go on not knowing, how can I re-focus in the face of not knowing what this could be? I have been struggling with this question, any advice how to cope please?
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Old 03-29-2011, 05:30 PM   #10 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

Your pain certainly sounds like disc issues, although your cervical MRI was normal. Were there any irregularities at all in that MRI or was it completely normal? Your normal cervical MRI is most likely the reason they wouldn't order a lumbar MRI.

Having said that: to have cervical disc issues present at the same exact time as lumbar disc issues would be quite odd. However, if the lumbar issues came first, then there is a chance that your body compensated for those issues (this most likely would be done subconsciously) and eventually caused your cervial issues or vice versa. Then again, your cervical MRI was normal. Are you seeing why your neuro's are having problems?

Question: Who read the MRI? Did a neurosurgeon read it or a radiologist or your neuro?

Another question: You said you were hiking prior to your symptoms . . . could you have been bitten by some type of bug (e.g. a tick)? I know you said you tested negative for Lyme's but what type of test was it?

Once again, are you seeing why your neuro's are having problems? And once again, you might just have to wait and see. You very well could get better on your own. The body is amazing at healing.
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Old 03-29-2011, 05:45 PM   #11 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

Meli.
I know it seems horrid, but I have been where you are, and you do cope. You get to a stage where you just stop the tears and get on with it. My family had a terrible time when I slowed up and couldnt do the stuff I used to do. Yes ,I cried, lost my temper, etc etc. My husband was distraught to the point he could not function. Both of us now just live our lives as before all this. I could not keep waking uo each morning sick to the stomach with fear. No matter what was wrong, the fear was worse than the disability I had. So, I managed to move on. You know this forum has helped me. I have befriended people with emense bravery, battling ALS each day, but being so very strong. I have a neurological thing, that has been going on for 4 years now. I am still not sure what it is, but Its not ALS, so I am happy with each day that I am given, and each step I take is wonderful.
I am telling you all this, not because I believe you have some incurable illness, not because I have any idea what you do or do not have, but rather because I recognise in your post the same emotion and panic that I felt for 3 years. This is how I coped, but it did take time.

It is a waiting game, and as Wright and I both said, you just have to wait and see. There is every chance it may just subside and dissappear, or things will become apparent that may help your Neurologist know what path to go down.

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Old 03-29-2011, 05:50 PM   #12 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

The cervical mri report was dictated by a radiologist. The neurologist didn't play a part, more than relaying the info. If I had a pinched nerve or disk problems, would the c-spine have showed it? There was a t2 incidental hemangioma. I also had been whiplashed 18 months before all this began, which I wonder if this triggered all the problems (my right arm was yanked and my whole body was tossed around to left direction). I still think that a lumbar mri would be useful, if just to remove the ? of the leg/pelvic weakness/pain. The lyme test I had was, Lyme Sern w Rflx., I didn't have any bites or rash that I know of. I certainly hope that my body heals itself too Where do I go from here...
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Old 03-29-2011, 05:56 PM   #13 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

thank you for your kindness, I will try to be strong, and live the best I can, if easier said than done. I will visit here for support too...
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Old 03-29-2011, 06:46 PM   #14 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

Hi Meli,

I found your post thru a search on similar symptoms as you! You and I are walking a VERY similar path right now. If I had your email address I'd contact you personally. I am in your exact shoes,,it is shocking to me really. It is sad to read your journey so far--my symptoms hit me end of Jan. of this year (so not as long as you so far). I am a 41yr. old female--with 2 teen daughters & an adopted daughter from China (who is now 3yrs. old). Until Jan. of this year-I was in great health, content in my life and really blessed by everything (for real!). My husband's work has never been better (amazing in this economy too). I am (or was) an active gal--rock climber, dancer, active with my kids & do many hands on work around the house.

Since Jan.-- I've seen my rheumatologist (I've seen for 8yrs. due to high ANA,,and suspected "mix connective tissue disorder"), neurologist & Orthopedic dr. I've had EEG, MRI (head,cervical & thoratic) and many blood tests come back normal. I had a similar experience with neurologist--suggesting "psycho-somatic". I've had muscle jerks (at times rather strong,,jerking my arms up or legs up), weakness in legs (esp. right that buckles under me at times,,almost falling), arm weakness (esp. after use), hand weakness (in which I drop things), right foot drop, joint pain in right hip & right knees. I can't walk normally anymore--I walk rather awkward now. I have no ankle reflexs & the plantar reflex (bottom of foot)-I have no response at all (they ask if I can feel it--I say, "yes",,but faintly). I can't lift my legs (using thigh muscles) if any type of slight resistances is applied.

At this point- my Rheumatologist seems more concerned about my health than my Neurologist. My ANA did raise from a low of 1:80 (which was lower than it had ever been in 8yrs.) to 1:340 in two months. My Rheumatologist is currently testing me for "Myasthenia Gravis" (autoimmune issue that attacks the nerves of the muscles)--but don't have results back yet. Neurologist is running a EMG on my right leg this Monday (but I got the impression--was to appease me). But my Rheumatologist definately wanted me to have it done. My Orthopedic dr. is giving the bone scan & MRI of my lumbar area tomorrow. (I too have extreme tightness of my lower back,,with stiff muscles of my legs).

I'd love to be a common support for you during your journey thru this --as we travel a similar journey. I don't know if we can share personal email addresses on here or not. So, I'll just wait to see if you get this first.

BTW-- I looked at my neurologist at last visit,,when she looked stumped with my condition--and I said- "This is not pyschological,,I know something is wrong with me. And I will go to Mayo Clinic if I have to." I have a counseling degree myself from college,, I've been thru my own dealings with my past 7yrs. ago-and have a peace about everything "pychologically". I am determined to beat / overcome this health issue--because I owe to my kids & my husband (of 21yrs.). Blessings to you! Please hang in there,,you are not alone!
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Old 03-29-2011, 07:00 PM   #15 (permalink)
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Default Re: Normal EMGS- and weakness/tightness/pain

Quote:
Originally Posted by meli View Post
hi, what do you mean you don't feel weak? How is subjective not MND,
The "weakness" caused by MND is caused by the progressive paralysis of more and more muscle fibers caused by motor neuron death. As more muscle fibers within a muscle become paralyzed, the way the muscle works changes. It moves differently and its tone changes. That's what the doctors are looking for when they do the pushing-pulling tests on your arms and legs, why they make you wiggle your tongue around and why they make you track their finger around with your eyes only.

Muscles completely paralyzed by MND don't move. You can pick up an object -- I can't close my hand, either of them. You can place my fingers around an object; as soon as you release them, my fingers will fall away from the object, unless gravity or friction holds them in place.

Muscles partially paralyzed by MND move erratically. You might be able to scratch your chin and not the top of your head. You might spread the fingers on your hand and notice that one finger will not completely straighten. Or you might make more mistakes typing because one finger won't hit a certain key any more. You might be able to tie the laces on your shoe, but not the much smaller laces on a small child's shoe.

With ALS/MND, it's not how your body feels, but how your body fails. ALS is a progressive degenerative neuromuscular disease, which means that, over time (and a short time at that), more and more nerves and the muscles that they control will fail -- permanently. It starts in one part of the body -- a hand, a foot, your mouth or tongue -- and spreads through the body from there.

If no muscles are failing, it's not ALS/MND. If the muscle failures aren't spreading -- from the fingers up the arm, from the foot up the leg, or from the tongue to the rest of the mouth and throat -- it's not likely to be ALS/MND. If your problems come and go, it's not ALS/MND.

One other thing you might want to consider is seeing a rheumatologist. If your symptoms aren't being caused by a neurological problems, neuros aren't much help, as you've seen. Rheumatologists see and treat a wider spectrum of ailments and one might be able to get you some better answers than you've gotten so far.

Good luck.

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