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Brain mri negative - could it still be MS?

I'm a 39 yr old Male.I have been suffering from this for about 20yrs, it started with twitching in my eye, legs & arms. All but the eye have slowed over the yrs in frequency, but I've had other symptoms over the yrs - prickly, numb feelings in legs, strange pains in my hands and forearms, pins and needles in my hands and feet... There have been other strange sensations too.
4 months ago I had an attack of some kind, it lasted for about 5 weeks, I had vertigo, dizziness and nausea.A heavy feeling in my legs and I noticed my left eye is blurry. My balance was off and I felt like I was wobling while I walked.
It went away by and large, but 6 weeks later I got this terrible squeezing feeling in my ribs, back and throat, it lasted for 2 weeks. I came across articles about the MS hug. When I looked at the symptoms of MS, i ticked almost all the boxes, so i went to see a neuro. The brain mri was clear, the doc only saw the report, but not the images and is relying on the radiographers report to dx. (I am not happy with this)
I have symptoms daily, my hands and forearms get sharp pains that come and go, If I grip something tight it hurts, if I do nothing it still hurts, my eye twitches non-stop and I get beating twitches in my arms, legs and occasionally my cheeks and lips. My legs feel stiff and crampy often and i have been unusually fatigued over the last year.I also get lightning-like shock pains in my arms and torso occasionally (they r scary!)
From my symptoms, if it's MS at all,it seems that there would more likely be sclerosis on my spinal cord than the brain. My neuro only wanted a brain mri. Now that its clear he has basically washed his hands of me, saying if its clear then the dx isnt likely to be MS.
My Vit D test cam back as extremely low, so I have been supplementing - I know there's a connection between low Vit D and MS.
My problem is that I am suffering in silence, i know that these symptoms r real, and I fear that if its MS, I have most likely had it for many years. Is it possible that I have progressed to a new level of the disease and could a clear brain mri be a false negative? I dont feel like my neuro is taking me seriously at all :(
Any advice? Should I insist on a spinal mri or blood tests or even a spinal tap?
Apologies for the long winded story, but honestly I have had so many symptoms over the years that I have learnt to cope with them. It is a daily struggle, and I am still in limbo.
3 Responses
5112396 tn?1378017983
Hi there!

A lot of us here have vision issues, so if you don't get a lot of response you may consider breaking up your post into more manageable bite-size paragraphs.

Going from the parts I could pick out, a more typical work-up for possible MS would indeed include an MRI of the cervical spine as well. But be careful about trying to pick out where a lesion is likely located based on signs and symptoms. It can be tricky unless it's something quite specific like optic neuritis (which will be an issue on the optic nerve of the effected eye)

Also, a neuro typically shouldn't make sweeping statements based off the radiologist's report alone. MS is still a clinical diagnosis (meaning from the neurologist's physical exams), with the images helping to refine the likely issues at hand.

You may find looking over our health pages helpful. http://www.medhelp.org/health_pages/list?cid=36 Specifically http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36 That isn't to say it can't be something else, rather you may consider shopping for a new neurologist.
429700 tn?1308007823
I'm sorry your suffering with no answers as to what is causing your symptoms.  

You may not have MS because there are many mimics for the disease.  Some are quiet serious.  Your neuro should not have dismissed you without any further testing or referrals.  

Here's what I would do.  I would either find another neurologist or better yet, an MS specialist.  An MS specialist is of course an expert on MS, but is very knowledgeable on the mimics of MS.  

Yes, MS can affect other areas of the nervous system.  In the least, an MRI of the cervical spine should have been done.  There are many other tests that would be helpful.  

Was your MRI done on a closed machine?  I've had a negative MRI on an open MRI machine.  It wasn't strong enough.  

I'd also see an ophthalmologist about your blurry vision.
1831849 tn?1383228392
I too would vote for finding an MS specialist. They will be able to conduct the proper clinical exam and order the right MRI's. Also they should be able to order all of the blood work necessary to rule out MS mimics, like Lyme disease.

If you meet with an MS specialist, try and focus on your top 3-4 current symptoms. You likely won't have time to bring up all of your symptoms at the first visit. Instead, write all of your symptoms down in a journal. Include approximate dates and what you may have been doing when you first noticed a symptom. Having this ready will allow you to leave it with the doc.

Get a copy of the radiologist report from the brain MRI you mentioned, and a copy of the study on CD if available. Start to build a master file of all your test results and symptom journal. I found it very helpful to have copies of this file available for each doctor I saw.

Take a deep breath, try and relax and keep us posted!

Kyle
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