demyelination

[Bobbi D]

After 6 years of various symptoms which comes and goes at random - stiffness, extreme fatigue, dizziness, numbness, mood swings, depression, etc. and numerous tests to rule out everything I finally was sent to a neurologist this past month after I complained of a buzzing sensation in the back of my head and a shocklike feeling down my back and left leg when I moved my neck a certain way.  He sent me for an MRI of my cervical spine which showed demyelination and compression of the spinal cord. He is sending me for another MRI - this time of my brain (which is next week) and wrote on the prescription DX: CNS demyelinating disease.  During the exam he performed he said the shocklike feeling was called Lhermittes and also that I had a positive Babinski reflex.  He didn't say much else other than we'd talk after the brain MRI and that more than likely I would have to go see a neurosurgeon for the compression.  I have been researching the demyelination, Babinski and Lhermittes and happened upon a lot of articles about MS.  I cannot believe how many of the symptoms I have of MS.  Although when I am not going through one of these "spells" I feel absolutely fine....sometimes for months.  Can there be something other than MS that causes these same symptoms/signs?

[CCF Neuro[P] MD, RPS]

Dear Bobbi:

Yes there are other things that can cause demyelination but usually not in a relapsing remitting pattern.  I would hedge my bets on MS.  We often see cervical spinal cord demyelination in MS, in fact we have a clinical trial looking at percentage of cervical demyelination and MS upon initial diagnosis.  Let us know how the brain MRI turns out.  I would be suprised if it did not show Dawson fingers (demyelination of venules near the ventricles).  I am sorry that you may have MS.  

Sincerely,

CCF Neuro MD

[Bobbi]

My MRI is scheduled for July 5th and I will let you know how it turns out.  After all the reading I have done on the internet this week, I guess I wouldn't be surprised either if that is the diagnosis.  After six years of bloodwork and tests (my GP was convinced for a while it was lymes but I never tested positive for it) it would be - sort of - a relief to know what it is that is causing this problem and hopefully get on the right medications to keep it from progressing.  Thanks so much for providing this forum and allowing us to have a place to vent and get answers to our questions. I'd like to ask one more question if possible - since I feel fine in between the spells it would appear it's more of a relapsing remitting type - if in fact it is MS.  When someone has that type, does it generally stay that way or does it eventually progress to more disabling as time goes on?  Thanks again.

[Diagnostic clue to ALS]

Hi Bobbie,

If your brain MRI comes out negative, there is something called idiopathic transverse myelitis. Transverse myelitis usually only occurs once, however, in rare cases it can reoccur. The demyelination caused by MS lesions vs. Tranverse Myelitis lesions appear distinctly differently on an MRI. L'herimitte's sign, can be due to scarring from the lesion. It does not always mean that the lesion is actively inflammed. Did you have a spinal tap? Other diseases should be looked at before you are labeled with a MS diagnosis.

[Bobbi D]

No, I have not yet had a spinal tap. I have had tests that ruled out lymes, lupus, vitamin deficiency, etc.  All of my bloodwork has always been normal.  The c spine mri was the first test I had of that type.  Thanks for the info - I will research the transverse myelitis.

[Bob Richard]

Bobbi...please (after you exit this forum) go to your search engine and search on the word "hyperbaric". I am currently investigating this treatment (HBOT) because of my wife's condition and you may also find it interesting. It is non-invasive and reasonable cost-wise if NOT done in a hospital.
Good luck.
Bob