One MRI negative- looking for second opinion

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

One MRI negative- looking for second opinion

Postby whitejj1324 » Mon Jun 25, 2018 3:09 pm

Hello all,

I am a 21 year old male who has been experiencing MS symptoms for over 2 years now.

My symptoms:
(Most common)
Head numbness/tingling/crawling sensations on left side of scalp
Muscle twithing- this can be all over my body, but it is heavily on my right side. My right arm and leg will twitch fast and furiously for up to a week or so before calming down.
Fatigue- feeling down and out as well as sore in many of my muscles.
(less common)
Tingling in hands and arms- again, mainly on right side of body. My face on the right side and right hand will tingle and often feel numb.
Pins and needles feeling in fingers and hands
(happened a couple times last year)
Electrical feeling in my back- it felt as if hot, sparks and electricity was shooting down my spine and down to my legs. I haven't felt it since late March of 2017, but it happened multiple times before calming down.

Last February, after 3 separate doctors told me they believe I have MS, I had an MRI. That MRI came back normal (no lesions) and a following EMG also indicated all things normal. I have also had all the bloodwork imaginable. I've been tested for Lymes twice. Vitamins and minerals are all great, including B-12. No cancer markers. My bloodwork has always been healthy. After a few months of no symptoms, in November of 2017 I began having the same symptoms, but also paired with really bad GI symptoms. My family doctor suggested I try to stay off gluten and if that helped everything, I could have Celiacs Disease. It has now been 6 months since I have had gluten and the GI symptoms do feel better....
But now another "flare-up" as I have been calling them. The tingling, electric, pin-pricky feelings in my hands, arms and feet are back. My muscles are twitching unbelievably fast and hard. The left side of my scalp goes numb and almost feels like its cold and asleep.

I have gone back to my family doctor and he wants me to see another neurologist for a second opinion and maybe an MRI on my spine plus a spinal tap, should they feel the need. Obviously this whole ordeal has been extremely stressful and anxiety filled. Before these symptoms I used to be very active. Now when they come on I feel too fatigued to do anything and have even had to stop the college sport I was involved in. If anyone could shed some light on my experiences that would be great.

Bottom line is- does anyone think it is MS?
whitejj1324
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Re: One MRI negative- looking for second opinion

Postby ElliotB » Mon Jun 25, 2018 4:05 pm

Hi. Sorry you are ill. Could it be MS? Yes but keep in mind that there are about 400 illnesses that mimic the symptoms of MS.

Make sure the neurologist you see is one that specializes in MS, and you may want to have him check your current MRI scan. My first neurologist was certain I did not have MS. I went for a 2nd opinion and the 2nd neurologist who was a MS specialist easily made the diagnosis- she knew what to look for.

And it is probably a good idea to have your spine done as well, as some with MS have lesions in their spine and not the brain (or both of course) and to complicate things further, some (very few) are diagnosed with MS that have no lesions at all.
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Re: One MRI negative- looking for second opinion

Postby whitejj1324 » Mon Jun 25, 2018 5:19 pm

ElliotB,
thanks for your quick response! I did not see a neurologist that specialized in MS last time. I will make sure to seek a specialist this time around! Thank you for the info!
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Re: One MRI negative- looking for second opinion

Postby jimmylegs » Mon Jun 25, 2018 5:42 pm

hi and welcome :)
question: do you have a handy personal copy of your great vitamin and mineral results? there might be some action items in there the docs could easily have missed..
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: One MRI negative- looking for second opinion

Postby Zyklon » Tue Jun 26, 2018 7:01 am

Welcome,

Did you have an MS protocol MRI or only brain?
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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