Brain MRIand Evoked potentials in ruling out MS

[ellenc]

I am a 40 year old woman. Starting 8 months ago, I started experiencing tingling in my hands and feet ( all four), as well as color changes and intense cold in all four extremities.  

I have had a clear brain MRI, evoked potentials,( visual, audio, Baer)  and several clinical exams, all of which were fine. The neurologist I consulted was very definite in saying that my problems were not in the CNS, and that she felt that the answer would lie in a connective tissue disorder. However, I have had all kinds of blood work - ANA, etc,all clear.   My question is three -fold: Should I insist on a spinal tap  or a spinal MRI to see if these sensations originate in my spine? My neuro implied that  the EP's would find a problem in the spine if there was one.  
Also, do people with MS get these Raynaud-type sensations with bluish/reddish color changes?  I have read enough to know that MRI's can miss lesions, and that MS causes a spectrum of symptoms.

Could a spinal cord compression possibly casue all FOUR extremeties to feel this way?


I guess what I really need to know is if I should trust the neuro or push for more testing, since they can't seem to find an answer. I have NOT had any visual problems, weakness, numbness or other symptoms.

I sincerely appreciate anything you can help me with .  I am sinking into a real mental slump over this which is affecting my daily life. It's so difficlut to be in limbo. This forum is terrific.

[mabel]

Dear Doctor,

I just read a separate post on here by someone and they had CDT test done at well.  Mine was not done at Mayo.  Is it true that neuromuscular disorders can suppress the results of that test?  If so, should I have it redone and sent to Mayo to make sure it isn't elevated? I know my doctor send my MG test to Mayo to make sure the lab was correct.  Any information you have to offer on that would be helpful.  I don't drink either and I do not want liver damage on top of MG and whatever is causing my numbness.

Thank you.

[mabel]

Thank you for your answer. Here is what the information said. The CDT was the carbo-def transferrin ultraquant, whatever that is.  They did a motor sensory evaluate panel that included that and gm1,gd1a,gd1b, anti-hu, and ife paraprotein.  I am not sure what those are but they were ok. They have done a complete blood workup on me. Hopefully this information form the test panel will make sense to you on what it was.  If the vibration sense keeps getting worse, do you know if it will affect my walking?

Thank you

[CCF Neuro[P] MD, RPS]

Dear Vibration sense:

We do not have a neuropathy panel, and I am not quite sure what you mean by such a panel.  What you seem to describe is a an autoimmune disorder such a Sjogren's which could give a peripheral neuropathy.  However, not knowing what workup you have had I cannot not be exact.  A CDT test?  are you speaking of a Hereditary Sensory/Motor neuropathy?  Abbreviations can be institute specific and we try and not make comments on what can be a different meaning at a different institute.

Sorry, I can't help you.

CCF Neuro MD

[mabel]

Dear Dr.  I did not mean to stir things up regarding the neuropathy panel.  I just wanted to find out if my walking was going to be affected by all of this basically.  Please accept my apologies.

[goodgal31]

Hi a question regarding the above post on sensory neuropathy, she mentioned a neuropathy panel, is there a blood workup that they can do for neuropathy?  I had odd numbness, all testing normal, is there something I am missing I might be able to check out?

Also Dr if you've made it this far, how common is sensory neuropathy and what are the main causes the neuro's like yourself look for, or should I say rule out?  Thank you

[goodgal31]

Hi a question regarding the above post on sensory neuropathy, she mentioned a neuropathy panel, is there a blood workup that they can do for neuropathy?  I had odd numbness, all testing normal, is there something I am missing I might be able to check out?

Also Dr if you've made it this far, how common is sensory neuropathy and what are the main causes the neuro's like yourself look for, or should I say rule out?  Thank you

[mabel]

I would like to ask a question regarding vibration sense.  I have a sensory neuropathy of unknown origin at the present time and do not have constant pain only occasional buzzing, pins and needles, and soreness.  It started in my feet and has worked its way up to the knees.  I have occasional numbness in my hands and other places.  The areas in my feet and lower legs appear to be permanent as it spreads.  I have now lost vibration sense in the big toe on one foot and mid to lateral side of top left foot and 25-30% loss in ankles.   I do not drink, my vitamin b12 is good, I am in my late 30's and female.  All the serum tests have been ok for the sensory neuropathy panel as well as the emg, with exception of the abnormalities seen in Mg which I was diagnosed with.  I was recently diagnosed by an opthalmologist with keratoconjunctivits sicca.  The only exception that I can see regarding my tests and I haven't asked a doctor about it would be the CDT level they did in the neuropathy panel.  A friend of mine who works with labs told me that the CDT levels are supressed with neuromuscular illnesses and that it may actually be higher.  I do not know if what that person is telling me is true or not.  My CDT level was 3.7% based on a norm under 6%.  The only other issue was that my total protein has been steadily dropping without cause regarding diet, alcohol, etc.  

1) If the loss of vibration sense progresses more, will it cause problems with my walking?

2)  Do you have any thoughts on the other issues playing a role in the sensory neuropathy?

[Vibration sense (not related)]

I would like to ask a question regarding vibration sense.  I have a sensory neuropathy of unknown origin at the present time and do not have constant pain only occasional buzzing, pins and needles, and soreness.  It started in my feet and has worked its way up to the knees.  I have occasional numbness in my hands and other places.  The areas in my feet and lower legs appear to be permanent as it spreads.  I have now lost vibration sense in the big toe on one foot and mid to lateral side of top left foot and 25-30% loss in ankles.   I do not drink, my vitamin b12 is good, I am in my late 30's and female.  All the serum tests have been ok for the sensory neuropathy panel as well as the emg, with exception of the abnormalities seen in Mg which I was diagnosed with.  I was recently diagnosed by an opthalmologist with keratoconjunctivits sicca.  The only exception that I can see regarding my tests and I haven't asked a doctor about it would be the CDT level they did in the neuropathy panel.  A friend of mine who works with labs told me that the CDT levels are supressed with neuromuscular illnesses and that it may actually be higher.  I do not know if what that person is telling me is true or not.  My CDT level was 3.7% based on a norm under 6%.  The only other issue was that my total protein has been steadily dropping without cause regarding diet, alcohol, etc.  

1) If the loss of vibration sense progresses more, will it cause problems with my walking?

2)  Do you have any thoughts on the other issues playing a role in the sensory neuropathy?

[CCF Neuro[P] MD, RPS]

Dear Ann P:

A spinal cord compression would yield a very classic picture of having a sensory level (clear demarcation of loss of sensation, such as the unbilicus, or nipple line and not simply hands and feet), and loss of reflexes below the compression, with initial profound muscle weakness.  Usually loss of sensation in MS is one-sided, either the limb or limbs.  A spinal cord lesion typically gives one sided lesions below the site of the lesion.  In addition, the symptoms of MS are usually of the exacerbation and remitting type of symptoms in the initial parts of the diseases.  At this point, I would favor the collagen-vascular etiology of your symptoms.  

The lesions missed on MRI are usually the very small lesions,with usually indistinct symptoms, or when the lesions are in the cord and only the brain is imaged.  Your symptoms would be bilateral and hence should be picked up.  If the lesions are in the spine, it would likely take bilateral lesions.  I your insurance would cover it, for you piece of mind a spinal MRI would be of value.  An evoked potential would also be in the same vein, to ease your mind.  The CSF usually only verifies what the physical exam indicates.  It would be unusual for a CSF to be positive when the neurological exam is not indicative.

As probably well know, MS is a clinical diagnosis, one where the clinical symptoms are remitting and relapsing.  The tests of MRI and CSF analysis are only complementary to the neurological exam.  There are times when the symptoms are too indistinct to be diagnostic and it is only after a period of time when they become diagnostic.  

I don't think this is MS, but all physicians have been proven wrong.  Since I cannot do the exam, my judgement is limited.  Let us know what turns out.

Sincerely,

CCF Neuro MD