MS or ALS

[cardiactec]

Hi - I started having symptoms in June of muscle twitching and spasms. I had an EMG a month into symptoms - normal. I also started having issues of bladder incontinence, burning tongue, chewing/swallowing difficulties, and muscle burning, tingling, and pain on top of the twitching and spasms. Also some mild weakness (without signs of atrophy) in my left arm and leg) ......Lately the past two months my voice sounds like I have a cold, but I don't .... I had a second EMG performed four months into symptoms (and two months after the first EMG) and it showed mild polyphasia in my left leg and arm with reinnervation.

My symptoms collectively sound very similar to ALS ..... some also sound similar to MS ..... How accurate is EMG at picking up ALS in early stages?

I have not had an MRI yet to rule out MS ..... I have had a spinal tap and that was normal.

Please offer and advise, thoughts, opinions ..... very concerned.

Have any of you had your initial MS attack occuring with muscle symptoms (twitching, stiffness, spasms) and/or bladder incontinence/chewing/swallowing problems? from what i've read, sounds like most people with MS have their first initial attack involving the eyes ...... or numbness ....

[COBOB]

I was a Biomedical Engineering Technician for 12 years. Some MS patients have autonomic dysfunction.  It really depends where the lesions are.   CT is really good for high density  or high  "gradient" imaging:  Bone, hard tumors, Fluid vs. solid organs.  MRI is based on exciting molecules like the H2O where Oxygen has +16 proton charge compared to the +2 from the two hydrogens or selectively looking for huge chemical molecules that they can spin up in Magnetic Resonance Spectroscopy.  MRI is very good at imaging small difference in water content, so it can see muscle vs. tendon vs. cartilage. In the case of MS, the plaque lesions contain less water than the myelin, so on the T2 (an "inverted sequence) bone, plaques and other low water object have more signal.

PET is Positron Emission Tomography and requires a dose of a radioactive tag that decays and releases positrons.  Last I knew, Choline PET was being used for MS lesions (at least in research).  Choline PET is a common imaging modality for breast and prostate cancers.

Bob

[cardiactec]

Thanks Bob for the suggestions. I don't have any eye issues and I believe my neuro has ordered 3 of the 4 (?) types of evoked potential testing, which, I'm sure doesn't include VEP since I have no eye problems. I had the LP (lumbar punture) and it was completely normal. Had brain and C-spine (only) with and without contrast and that was normal.

You say "choline" PET. What is this? It would be great to find a way that could see lesions and wouldn't require surgery for pacer explant.  Is it very rare to be able to see lesions (MS) by CT?

Are you a dr or nurse? You are very knowledgable! And helpful!

Is autonomic dysfunction common in MS patients? I have orthostatic hypotension and orthostatic tachycardia in the 180-200 BPM range on a daily basis. I am only 28 and had to quit my career in cardiology and go out on disability bcuz of all this.

[COBOB]

I guess the PET would be easy since they could leave the pacer in place.

[COBOB]

If you have normal CMAPs that points away from the typical motor neuron diseases (MND.)  ALS is one of the MNDs. \

If you have bladder incontinence,  autonomic dysfunction/POTS/etc.      AND burning tongue, muscle burning, tingling, and pain On TOP of the twitching and spasms chewing/swallowing difficulties, mild weakness (without signs of atrophy) in my left arm and leg .......My question is:  What is common to the sensory, autonomic, and motor nervous systems?  Cord and Brain.  First thing I'd do is 1)  MRI Brain, C-Spine, T-Spine WO/W Gd contrast.  Since you have no Hx of eye issues (?)   No VEP.  2) Next L.P.   3) consider SSEP.

In terms of Brain MRI, any infratentorial lesion could be suspect for effecting sensory, motor and autonomic systems.   This is kind of rough to look at with traditional imaging.  There are some techniques using Functional MRI and choline PET that can bring out lesions not seen on standard MRI.

Bob

[cardiactec]

Bob - if paraspinal muscles tested were normal and no motor action potential units were observed in any of the areas of polyphasia/reinnervation, would this point away from MND ? Do you know?

[cardiactec]

Thank you for looking that information up for me. Kind of concerning from what I gather, in my particular situation. The info you provided is a little hard to follow because it's another language to me but thank you for it anyway. Polyphasia and reinnervation pretty much means there has been nerve damage but there was no mention of MND or question of it on my EMG.

I have a GI pacemaker implanted because I have idiopathic gastroparesis (I have a ten year history of autonomic dysfunction/POTS/etc. That is the reason my neuro is doing all these other tests (spinal, evoked potential) before ordering an MRI - because that'll mean surgery to explant my pacer. Hence, the long wait game and ever increasing anxiety as to what is going on.

[COBOB]

CMAP should have been Compound Muscle Action Potential.  As i thought abot this a bit, while most of the cervical and thoracic lesions I have seen are posterior and lateral cord lesions (most likely do the the large white matter surfaces) an anterior cord lesion could still be possible.  Given that, and the inability of MRI to provide clear grey matter imaging, it could be possible for an anterior cord lesion to cause polyphasic MUPs, but I would not consider there to be much sensitivity or specificity in using EMG/NCS for the diagnosis of MS.  It is another data point, but the Clinical Exam, Symptoms, MRI, LP and VEP are more specific and sensitive as diagnostic criteria for MS.

Bob

[COBOB]

CMAP is the Complex Motor Action Potential.  In an EMG/NCS, the stimulus causes a SNAP (Sensory Nerve Action Potential) that goes to the spinal cord/brian and the response back to the muscle is a CMAP.   You may also be masted to tighten a muscle without a shock during an EMG.  That is a voluntary CMAP.

Typically polyphasia (returned CMAP has 4 or more positive peaks) motor units on an EMG/NCS are associated with  MND -- these are motor neuron diseases that effect the anterior horn of the spinal column (ALS, SMA).  While diffuse peripheral demyelinating disease can be demonstrated on an EMG/NCS, decreased conduction velocity in the cord and brain do not cause polyphasic CMAP changes in an EMG/NCS.  The EMG/NCS can only measure from the stimulus to nerve root and from the nerve root to the muscle being activated.  This is really the turf of an electrodiagnostician.   A general neurologist usually doesn't see many patients with polyphasic MUPs due to anterior horn MND in their career.

MS typically doesn't cause changes in an EMG/NCS.  A normal EMG/NCS is considered a "rule out" showing that the peripheral nervous system is not causing the "buzzing", "twitching", and spasms.  

By the way, I had to pull out a text on "An Introduction to Neuro-Diagnostics" to look this stuff up

[essdipity]

It's very odd that your doctor would order an invasive test like an LP before he's even done an MRI. LPs are often not even necessary, and are far from definitive. VEP is good, but if it's normal that doesn't mean you don't have MS.

Have you looked at our Health Pages? (top right) You'll find lots of helpful info there.

Thanks for joining us. Please keep us posted, and I hope you get some answers soon.

ess

[cardiactec]

Thanks so much for all your responses.

Bob - a neurologist actually told me that in severe cases of demylination from MS, "polyphasia" can be seen on EMG. I'm not even sure what that means, but hoping that if this was ALS, that they would have seen the specific changes that occur in ALS already on my EMG. Bob. What do you mean by "normal CMAP"?

Do any of you have issues with burning tongue? This has occured twice over the past 6 months. It feels like I have scalded it on hot water/beverage but I haven't. ....

Red - my doctor has not shared his thoughts with me about what he thinks could be going on but I'm assuming he's thinking MS, just based on his eagerness to do an evoked potential (having it tomorrow in Boston) and also him already doing a tap on me...and also that he wants an MRI....

Jumpinjiminy - thank you for pointing out the info that another had questioned that is similar to my questions and concerns. I will read it.

[RedFlame]

I'm sorry I didn't communicate that very well.

Here is the best place to find info. about ALS.  You can hear their stories and share their grief.  They will put your mind at ease---I guarantee it!

http://www.alsforums.com/forum/als-mnd-support-group/

[COBOB]

I think ALS is a CNS disease that starts in the capsule of the brain, (grey matter.) And then specifically targets the white matter of the motor tract of the cerebrum.  I don't believe that it is a peripheral neuronal disease, like peripheral neuropathy.

Bob

[RedFlame]

Most of us here with MS have spasticity,, spasm, clonus movement and all kinds of twitches.  MS is a disease of the central nervous system.

These sensorial things don't happen with ALS.  

ALS attacks the actual muscle nerves in the peripheral nervous system.  That's why it's common that hand muscles go first followed by the feet.  

Has your doctor expressed concern about ALS?  

Red

[COBOB]

If you have limb weakness and a normal CMAP on EMG, that kind of goes against what is typical for ALS.  The other issue is the sensory changes.  Difficulty in swallowing can hit at any time in MS and is a very late stage change in the typical ALS patient.  Most ALS patients would loose control of their costal muscles and diaphragm before having issues with swallowing.

Bob

[jumpinjiminy]

Oops, I just reread and realized you haven't had and MRI. Sorry. ;-)

[jumpinjiminy]

This subject came up very recently. ALS is a motor nerve disease whereas MS hits both motor and sensory nerves. If you're having paresthesias, that would lean more toward the MS side of things than ALS. Check on page 2 if you would like to read the other discussion. Someone else asked this within the last couple of days.

It's so hard not to worry when vital everyday things are malfunctioning. Not everybody has these things happen in any particular order. It can show up in many different ways.

I'm not sure if an EMG would show anything with MS, as it's a central nervous system thing and not peripheral. That being said, I know next to nothing about nerve conduction studies and what their results mean. Maybe somebody else who has more of a clue will be along to give their input.

If the MRI shows something, you will be on your way to finding out some answers. But if it doesn't, please try to keep in mind that is a GOOD thing. It makes it frustrating with all the symptoms and no answers or direction to go on, but it's good if nothing shows up on the MRI. Was it brain or spinal cord or both?