Ask the Doctor: No Diagnosis after 16 Years of Symptoms

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Dr. Jack Burks

By Dr. Jack Burks
Chief Medical Officer for MSAA

Q: I started having MS-like symptoms in 1997 at the age of 36; I’m now 52. I had an MRI of my brain in 2009 (funded by MSAA). Unfortunately, my local doctor did not include the dye for the enhanced MRI. The MRI did show some lesions according to the radiologist’s report, but the neurologist didn’t think the MRI of my brain indicated MS. I also had a lumbar puncture, which according to the neurologist, did not have any evidence of the markers for MS in the spinal fluid.

My medical history includes: two mini-strokes (one showing on the MRI; another a few months after the lumbar puncture); toxoplasmosis (an infection caused by a parasite) discovered at age 20 when I went blind in one eye (which was later corrected by surgery); and I take medications for Type 2 diabetes (diagnosed in 2009), high blood pressure, and high cholesterol. My MS symptoms include weakness in my arms, heat sensitivity, fatigue, bowel problems, frequent urine leaking, and sporadic pain in my wrists and ankles (causing me to limp).

Questions: Is it possible that I have MS, but it is not showing up in the spinal fluid after 12 years, and since the MRI was not enhanced with the dye, more (older) lesions are not showing up? Is it possible that my congenital toxoplasmosis (likely culprit – my mother came in contact with cat feces in the garden when pregnant with me) could have caused lesions in my brain and/or spine causing neurological symptoms similar to MS? Note: A study at the Toxoplasmosis Center in Chicago indicated that toxoplasmosis can cause lesions in the spine. Is it possible that I have another disease that is mimicking MS and what are the other possibilities?

A: Sixteen years of confusion about your diagnosis is a long time. I can understand your frustration. Congenital toxoplasmosis (a parasite disease) complicates your medical history. There are many conditions that may “mimic” MS and neurologists are trained to look for these in “possible MS” patients.

I do not want to speculate about your potential for having MS. However, I would recommend getting another opinion from an MS expert who can go over your medical history in detail, perform a neurological examination, look at past and current MRI results, and possibly order another MRI with a more powerful magnet (3-T). Additional testing could possibly include repeating your lumbar puncture, getting “evoked-potential tests,” or getting an OCT (optical coherence tomography) test on your eyes. Other tests for “MS mimickers” may also be needed to rule out other possibilities.

Have you ever been treated with an MS drug? If so, did it help? In summary, I recommend another opinion from an MS specialist. You may have a condition that mimics MS in some ways. I wish you luck in your search for your diagnosis and possible treatment.

Q: My question is about foot swelling. My right side is affected by MS and I experience ankle drop. I had to get a new ankle-foot orthosis (AFO), due to swelling of my foot. The swelling became so severe that the AFO was cutting into my foot. My doctor had a venous Doppler ultrasound done, but the results turned up no problems and I have excellent circulation. What causes this type of swelling and is there a name to this condition?

A: It is not uncommon for MS patients to have swollen feet and hands, or to have red, blue, or white feet and hands. Some of these symptoms are painful and others are just annoying.

One explanation is that in addition to the central nervous system (CNS), MS may also damage the autonomic nervous system (ANS). The ANS helps control blood flow to and from the extremities. The ANS also controls the heart rate, blood pressure, and other functions. The underlying cause of feet swelling may be from ANS damage in the brain or spinal cord. However, I am pleased that your evaluation showed “excellent circulation.”

One last thought, have your tried the electrical-stimulation technologies to help reduce foot drop? These may be of help, and if interested, please ask your doctor and physical therapist (PT) if something like this may be appropriate for you.

Q: Is it possible for a medical event to trigger MS, which may otherwise be suppressed? Twenty years ago, I was overcome by carbon monoxide and lost consciousness. About a year later, I exhibited symptoms, and after a lumbar puncture, it was confirmed that I had MS. Although my condition continues to degrade, I have maintained a very healthy and positive attitude.

A: Since we do not fully understand the underlying cause of MS, attributing it to any one factor is difficult. Obviously, carbon monoxide can be deadly or very toxic to the brain. However, patients who recover usually remain stable. You had a year lapse before developing MS, which makes it more unlikely that it triggered your MS. And please keep up your healthy and positive attitude. Remember that happiness is a state of mind more than a state of health.

Dr. Jack Burks is an international MS neurologist, writer, lecturer, and researcher. Dr. Burks is a clinical professor of neurology at the Florida International University in Miami and has authored textbooks, chapters, and articles on MS.

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