Monday, May 28, 2012

Friday, February 03, 2012 ElvisMc asks

Q: Could I be among the 5% who have MS with a negative MRI?

Hello,I have suffered from urinary retention, left sided weakness, shocks in my back, my head and down the left side of my body as well as leg buckling and legs that tremble when I try to walk up and down stairs. All of these things have happened over approximately 15 years. I was checked for ms about seven years ago and no lesions and checked again just recently ( it's a long and complicated story). I mentioned that my left side is weak and the neurologist confirmed this with his examination. I had grade 4 clonus in my left leg, increased muscle tone and a number of other problems. I had grade 3 clonus in my right leg. He said that there is definitely some nerve damage. He told me that he didn't care what the mri showed that he was going to send me to an ms specialist because I had such strong evidence of nerve damage. However when the mri ( head and spine, no contrast) came back negative he just told me that I don't have ms. It was so strange that he asked if my problems were progressing and both my husband and I said definitely( my health and energy have dramatically changed over the last few years), he didn't seem to hear it. He said he thought that it must have been some trauma to my spinal cord and that whatever damage was done has been done and there was nothing else that could be done about it. Sorry for the long winded explanation but here is my question. Why is it that nerve damage that is apparently caused by a one time event, causes intermittent symptoms with more and more residual damage? Oh yes, and I have also been diagnosed with fibromyalgia which he feels is a distinct problem. I have extreme pain. Sometimes aching but it mostly feels as though someone has a voodoo doll and is stabbing me in my legs or like a pin has been shoved into my eye.I am on Lyrica for this and it has really helped. Of course I do not wish for a diagnosis of ms but my research tells me that my medical history and neurological exam is highly suggestive of it ( even the neurologist said that prior to the mri findings - he was very, very concerned). It's like I was talking to a different doctor today. It's hard to walk away again without a diagnosis. I have no one to talk to who really understands. I feel like crying especially when my legs tremble walking up and down the stairs, or when I am so dizzy that I feel like I might pass out. I never really talk openly about these things because I don't want to be a drain on people. Just wondering if I could get some advice. Thanks for listening :)

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Answers (1)
Lisa Emrich, Health Guide
2/11/12 1:12pm

Hi ElvisMc,

 

I'm so very sorry to hear that you are not finding answers.  It makes it harder when you feel as though you can't really share your feelings and concerns openly with those around you.  Finding someone who understands is very helpful.

 

I would agree that your history and symptoms sound suspect for MS (or a related disease).  I would seek out that MS specialist for a 2nd opinion.  Just because the MRI report doesn't show typical lesions, that doesn't mean that you might not have MS.

 

What strength of MRI machine was used?  That can affect the results of the test.  Did the MRI technician inject a contrast dye into your veins and take more pictures?  If not, your exam was not complete. 

 

Of course it is possible that you are in the 5% of people diagnosed with MS who do not have lesions show up on MRI scans.  A neurologist who specializes in MS will look for more specific things.  It's possible that you might not have MS, but at least you will have explored the possibility when someone better qualified in the specific field of MS.

 

"Why is it that nerve damage that is apparently caused by a one time event, causes intermittent symptoms with more and more residual damage?"

 

With MS, when there is nerve damage, the symptoms can arise at any time.  If your body temperature rises, then symptoms might become more noticeable.  If inflammation is active, then symptoms can be more prominent.  With MS, damage can be occurring even without obvious symptoms.

 

If I were you, I would seek a 2nd opinion.  Good luck, and please let me know how it goes.

 

Lisa

 

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By ElvisMc— Last Modified: 02/11/12, First Published: 02/03/12