EMG Neg VER negative MRI Negative... Could I still have MS?

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EMG Neg VER negative MRI Negative... Could I still have MS?

Postby 400ex » Mon Sep 26, 2011 10:58 pm

Hi all.. I started having symptoms about 2 years ago... Burning sensation in scalp. Sensative to light. Floaters. Pins and needles in feet. Constant twitching in my muscles (No jerks) They have considerably subsided.

Now I have twitches(When I am laying down), burning in right foot(when I am laying down), when I get out of bed in the morning it feels like im stepping on glass, fatigue in the middle of the day / after I wake up... and at times when I move my eyes very quickly I will see color spots(Rarely)

I had 2 MRI's. One with out contrast and one with contrast on the brain. Both came back normal. I then did a VER, it came back normal. EMG was also Negative.




Here is the catch... I take Topamax (For epilepsy )and have been for about 6 years. some of these sympoms can be contributed to the meds... The pins and needles in the feet at least.. But it's been happening more often then usual...


My doctor I have told him I still twitch I told him about the pins and needles. He says it's nothing to worry about. Ovbiously there is something to worry about if my body is doing this for 2 years! My only question is... If these tests came back normal, could it still be MS? My first guess was MS and I am thinking about calling my doctor tomorrow and letting him know I want to proceed with more tests.
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Re: EMG Neg VER negative MRI Negative... Could I still have

Postby euphoniaa » Tue Sep 27, 2011 11:25 am

400ex wrote:Hi all.. I started having symptoms about 2 years ago... Burning sensation in scalp. Sensative to light. Floaters. Pins and needles in feet. Constant twitching in my muscles (No jerks) They have considerably subsided.

Now I have twitches(When I am laying down), burning in right foot(when I am laying down), when I get out of bed in the morning it feels like im stepping on glass, fatigue in the middle of the day / after I wake up... and at times when I move my eyes very quickly I will see color spots(Rarely)

I had 2 MRI's. One with out contrast and one with contrast on the brain. Both came back normal. I then did a VER, it came back normal. EMG was also Negative.

Here is the catch... I take Topamax (For epilepsy )and have been for about 6 years. some of these sympoms can be contributed to the meds... The pins and needles in the feet at least.. But it's been happening more often then usual...

My only question is... If these tests came back normal, could it still be MS? My first guess was MS and I am thinking about calling my doctor tomorrow and letting him know I want to proceed with more tests.


Hi 400ex,

I'm sorry to hear about your problems! You ask whether it's possible for you to still have MS? Without a single definitive test for MS, it's always possible. But...I see that you've already tested negative for the main ones - especially with no lesions on a brain MRI. Multiple sclerosis stands for multiple scars or lesions, and it looks like they can't find any in your case. I posted pics of my own brain a while back – jammed with 'classic' MS lesions. Doctors are used to seeing brain examples like mine, so it makes sense that they'd be hesitant to call it MS with no sign of lesions. Check mine out here:
general-discussion-f1/topic16335.html

I also tested positive on the VEP, the LP (lumbar puncture or spinal tap) and the EMGs/SSEPs. However, EMGs (needles and electric shocks) are to identify peripheral nerve damage and not MS. I have both. In fact, my leg twitching actually started that evening after testing - hours & hours of needles, electric shocks, and electrodes.

And about "more tests." An LP may help to identify 'O-Bands,' but there are many other causes for them besides MS. You could also ask for an MRI of your C-spine, because some MS patients have only spinal lesions. However, spinal lesions usually cause much more severe symptoms than yours - and are more disabling than brain lesions. I'll add a couple of other notes and suggestions for you also. Floaters are pretty common in the general population and not indicative of MS, but check with an eye doctor.

Here's a link to Mayo and a quote about them:
http://www.mayoclinic.com/health/eye-floaters/DS01036
Mayo on Floaters:
When to see a doctor
Most people have a few floaters bouncing around inside their eyes. But you should contact an eye specialist promptly if you notice a flood of new floaters, especially if you also see flashes of light or lose your peripheral vision.


And one more note: Topamax has a lot of potential side effects, including paresthesias in general. Here's a list I found:
http://epilepsy.emedtv.com/topamax/topa ... fects.html
Unusual sensations, such as burning or tingling (paresthesias) -- in up to 51 percent of people
• Dizziness -- up to 32 percent
Fatigue -- up to 30 percent
• Drowsiness -- up to 29 percent
• Mental and physical slowing or delays -- up to 21 percent
• Nervousness -- up to 19 percent
• Upper respiratory infection (such as the common cold) -- up to 18 percent
• Coordination problems -- up to 16 percent
• Weight loss -- up to 16 percent (see Topamax Weight Loss)
• Loss of appetite -- up to 15 percent
• Taste changes -- up to 15 percent
• Confusion -- up to 14 percent
• Difficulty with concentration or attention -- up to 14 percent
• Nausea -- up to 14 percent.

Some other common side effects, occurring in 5 to 13 percent of adults, included:

• Diarrhea
• Memory loss
• Anxiety
• Language or speech problems
• Changes in gait (walking pattern)
• Sinus infection or irritation
• Injury
• Insomnia
• Mood problems
• Decreased sense of touch
• Viral infections
• Abdominal pain (stomach pain)
• Joint pain
• Weakness
• Sore throat
• Dry mouth
• Indigestion
• Mood problems
• Back pain.


It's obvious you have some weird neurological symptoms going on, and I know most people want a name for their condition, but that's often a long, difficult task. And naming a condition may not even help much. MS has no real simple, effective treatment anyway (neither does peripheral nerve damage).

I suggest that you take a deep breath, :smile: and concentrate on optimizing your health through diet, exercise, sleep, etc. I'm extremely grateful that no one ever diagnosed me years ago anyway, which forced me to concentrate on making my body healthier. And I'm convinced that was the best choice I've ever made. :smile:

I wish you the best in finding answers and relief!
Last edited by euphoniaa on Tue Sep 27, 2011 3:28 pm, edited 1 time in total.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: EMG Neg VER negative MRI Negative... Could I still have

Postby 400ex » Tue Sep 27, 2011 3:12 pm

Thank you and god bless.

I know Topamax could be the culprit. It never gave me such symptoms before except when I first started it. I find it weird to give me reverse affects now.

I am super happy all these tests came back negative and my Opthamologist didn't find any inflammation of the nerve either.

However, these symptoms have some-what put a drag on my life. MS is scary and apparently WebMD tells me with the symptom checker, that I have it or lyme. Which I have all been tested for.

This is all very grueling and annoying as I have been dealing with this for years and still now answer..

So thank you and god bless
-Greg
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Re: EMG Neg VER negative MRI Negative... Could I still have

Postby 400ex » Wed Sep 28, 2011 9:31 am

Update::

Last night my body got very itchy and my right foot felt like it was on fire. I called my doctor today and he set me up for another EMG..
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Re: EMG Neg VER negative MRI Negative... Could I still have

Postby xnerd » Sun Mar 02, 2014 7:07 pm

ask for a paraneoplastic panel.
it should have been done already
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