I have had Crohn's Disease for about 25 years resulting in surgery with stoma. Since then I have notice that I have had very heavy legs for all these years. Then about 5 years ago, with the drop of my vitamin D, I had numbness in my feet, hand, and shocking toes that started mildly increasing to hard shocks. I went to a neurologist for testing, who then sent me to a MS Specialist. My brain scan showed a lesion, VEP vision test showed optic neuritis, biopsy on my legs shows small fiber neuropathy. Today my legs have increased in the heavy feeling making walking hard to do. Yet only one lesion was noted on my brain. Spine MRI was ok. My question is the heaviness I felt from my legs for years was that the beginning of the MS or the beginning of Neuropathy?
Inflammatory bowel diseases of all types, including Crohn’s disease, are occasionally associated with neurological problems including various types of peripheral neuropathies. Multiple Sclerosis is also associated with inflammatory bowel diseases at a rate that exceeds the chance occurrence of these disorders in the general population. Sometimes there is only minimal evidence of inflammatory demyelination in the nervous system of Crohn’s patient; this minimal evidence may include non-specific white matter lesions without any other findings suggestive of MS. Many of these people with minimal evidence of MS will never develop symptoms that can be attributed to MS. This can create difficulty when we attempt to assign a causal attribution to the many neurological symptoms an individual with inflammatory bowel disease can experience.
Let’s take a closer look at your case: 5 years ago you developed symptoms suggestive of a peripheral neuropathy. Although I do not have access to your examination findings and test results, it sounds like your doctors discovered a peripheral neuropathy that included “small fibers”. These are nerve fibers that transmit sensations of pain and temperature, as well as autonomic function. Although small nerve fibers are not directly involved in motor function, heaviness in the legs is a common complaint in patients with small fiber neuropathy, perhaps because of their underlying condition, neuropathic pain or the autonomic neuropathy.
There is nothing in your history or evaluation to suggest Multiple Sclerosis except the results from your VEP (visual evoked potentials). These results are hard to interpret since inflammatory bowel diseases can be associated with optic neurpathies as well. By the way, the term “Optic Neuritis” refers to a syndrome of acute inflammation in the optic nerve resulting in acute visual loss and usually eye pain which increases with eye movement. A VEP does not detect Optic Neuritis; a VEP can only detect abnormal electrical conduction in the visual pathways which in turn can be caused by many different disease processes including optic neuritis.
Similarly, a solitary T2 lesion on MRI is insufficient evidence of MS and can be caused by many, many different problems or just associated with normal aging.
The most important thing to do is make sure you have adequate Vitamin B12 and Copper in your system, as a deficiency of either nutrient can cause similar symptoms
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Director of Hillcrest Neurology
Professor of Clinical Neurosciences
University of California San Diego
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