HAM/TSP Blood Test

What is HTLV-I associated myelopathy/tropical spastic paraparesis (HAM/TSP)?

HTLV-I associated myelopathy/tropical spastic paraparesis (HAM/TSP) is a chronic neurodegenerative disease that causes progressive inflammation of the spinal cord, resulting in weakness, stiffness, and difficulty walking. It is caused by the Human T-Cell Lymphotropic Virus Type I (HTLV-I), a retrovirus that infects white blood cells and triggers an immune response that damages the spinal cord. The Human T-Cell Lymphotropic Virus I, II (HTLV-I/HTLV-II) Qualitative test is the most important test for diagnosis because it detects the presence of HTLV-I DNA, confirming the underlying viral infection.

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What causes HAM/TSP?

HAM/TSP is caused by the Human T-Cell Lymphotropic Virus Type I (HTLV-I), a retrovirus that infects CD4+ T lymphocytes (white blood cells). After infection, the virus can trigger a chronic inflammatory response in the spinal cord, leading to progressive damage of the nerve fibers. While many people infected with HTLV-I remain asymptomatic throughout their lives, approximately 1-2% develop HAM/TSP, typically years or decades after the initial infection. The exact mechanism that causes some infected individuals to develop neurological symptoms while others do not is still being studied, but it involves a combination of viral load, immune response, and genetic factors.

What is the best test for HAM/TSP?

The Human T-Cell Lymphotropic Virus I, II (HTLV-I/HTLV-II) Qualitative test is the most important test for HAM/TSP because it detects the presence of HTLV-I DNA in your blood, confirming the underlying viral infection that causes this condition. This blood test is essential for diagnosis since HAM/TSP cannot develop without HTLV-I infection. A positive HTLV-I result, combined with characteristic neurological symptoms like progressive leg weakness, stiffness, and walking difficulty, helps your healthcare provider make an accurate diagnosis. While the blood test confirms viral infection, your doctor will also perform neurological examinations and may order imaging studies like MRI to assess spinal cord inflammation and rule out other conditions with similar symptoms.

When should I get tested for HAM/TSP?

You should get tested if you experience progressive weakness or stiffness in your legs, difficulty walking or maintaining balance, frequent urinary urgency or bladder control problems, or lower back pain that worsens over time. Testing is especially important if you were born in or have lived in areas where HTLV-I is common, such as Japan, the Caribbean, parts of South America, or sub-Saharan Africa. You should also consider testing if you have received blood transfusions before 1988 (when screening began), if you have a sexual partner with known HTLV-I infection, or if your mother had HTLV-I infection (the virus can be transmitted through breastfeeding). Early detection helps your healthcare provider monitor your condition and begin appropriate management to slow disease progression.

What are the symptoms of HAM/TSP?
HAM/TSP causes progressive neurological symptoms that typically develop slowly over months to years. The most common symptoms include weakness and stiffness in both legs (spastic paraparesis), difficulty walking that gradually worsens, muscle spasms or cramps in the legs, and problems with balance and coordination. You might also experience bladder problems such as urgency, frequency, or incontinence, as well as bowel dysfunction and constipation. Lower back pain is common, and some people develop numbness or tingling sensations in the legs. Sexual dysfunction can also occur. Symptoms usually affect both legs symmetrically and tend to progress slowly, with most people eventually requiring walking aids or wheelchairs.
Who is at risk for HAM/TSP?
People at highest risk for HAM/TSP are those infected with HTLV-I, particularly individuals from endemic regions including southwestern Japan, the Caribbean basin, parts of Central and South America, sub-Saharan Africa, and parts of the Middle East. Women are 2-3 times more likely to develop HAM/TSP than men, and the disease typically appears in adulthood, most commonly between ages 40-60. Risk factors for HTLV-I infection include being born to an infected mother, receiving unscreened blood transfusions (especially before 1988), engaging in unprotected sex with an infected partner, sharing needles for drug use, or receiving an organ transplant from an infected donor. Having HTLV-I infection does not guarantee you will develop HAM/TSP, as only 1-2% of infected individuals develop this neurological complication.
What happens if HAM/TSP is left untreated?
If HAM/TSP is left unmanaged, the progressive spinal cord inflammation leads to worsening disability over time. Leg weakness and spasticity gradually increase, making walking increasingly difficult and eventually impossible without assistance. Most people progress from normal walking to needing a cane, then a walker, and ultimately a wheelchair, typically over 10-20 years. Untreated bladder dysfunction can lead to recurrent urinary tract infections, kidney damage, and complete loss of bladder control. Chronic constipation can cause serious complications, and immobility increases the risk of pressure sores, blood clots, pneumonia, and muscle wasting. While HAM/TSP itself is not typically fatal, complications from severe disability can significantly impact life expectancy. Early diagnosis and management can help slow progression, manage symptoms, and maintain quality of life for longer.
Can HAM/TSP be diagnosed with a blood test?
Yes, blood testing is essential for HAM/TSP diagnosis, as it detects the HTLV-I virus that causes this condition. The Human T-Cell Lymphotropic Virus I, II (HTLV-I/HTLV-II) Qualitative blood test identifies HTLV-I DNA or antibodies, confirming viral infection. However, a complete diagnosis requires more than just a positive blood test, since most people with HTLV-I never develop HAM/TSP. Your healthcare provider will combine the blood test results with your clinical symptoms, neurological examination findings, and often additional tests like MRI imaging of the spinal cord and cerebrospinal fluid analysis. The blood test confirms the presence of the causative virus, while other evaluations confirm the characteristic spinal cord inflammation and rule out other conditions with similar symptoms, such as multiple sclerosis or spinal cord tumors.
How is HAM/TSP treated?
HAM/TSP currently has no cure, but treatment focuses on managing symptoms and slowing disease progression. Corticosteroids like prednisone or interferon-alpha may be used to reduce spinal cord inflammation in some patients. Muscle relaxants such as baclofen or tizanidine help control leg stiffness and spasms. Physical therapy is crucial for maintaining mobility, strength, and flexibility for as long as possible. Bladder problems are managed with medications like oxybutynin or through intermittent catheterization. Pain management may include medications like gabapentin or pregabalin. Assistive devices such as canes, walkers, or wheelchairs help maintain independence as the disease progresses. Some patients may benefit from experimental treatments with antiviral medications or immunomodulatory therapies, though these remain under investigation. Regular follow-up with a neurologist is important to adjust treatments as symptoms change.
How can I prevent HAM/TSP?
Preventing HAM/TSP means preventing HTLV-I infection, since the virus causes the disease. Practice safe sex by using condoms consistently, especially if you have multiple partners or live in areas where HTLV-I is common. If you are pregnant and have HTLV-I, avoid breastfeeding, as the virus transmits through breast milk; formula feeding significantly reduces transmission to your baby. The blood supply in the United States has been screened for HTLV-I since 1988, making transmission through transfusions extremely rare. Never share needles or drug injection equipment. If you know you have HTLV-I infection, inform your healthcare providers before any procedures, and notify sexual partners so they can get tested. While you cannot prevent HAM/TSP once you have HTLV-I infection, maintaining overall health, staying active, and getting regular medical checkups may help detect early symptoms when interventions are most effective.
What can I do at home for HAM/TSP?
At home, focus on maintaining mobility and independence for as long as possible through regular gentle exercise and stretching to prevent muscle stiffness and contractures. Daily leg stretches, range-of-motion exercises, and water-based activities can be particularly helpful. Stay hydrated and eat a high-fiber diet to manage constipation, and establish a regular bathroom schedule to help with bladder control. Make your home safer by installing grab bars in bathrooms, removing tripping hazards like loose rugs, and ensuring good lighting throughout. Use assistive devices as recommended by your physical therapist, and do not wait until falls occur before accepting mobility aids. Maintain a healthy weight to reduce strain on weakened legs. Join support groups to connect with others managing HAM/TSP, as emotional support is crucial for coping with progressive disability. Keep all medical appointments and communicate openly with your healthcare team about new symptoms or concerns.
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HTLV-I DNA Not Detected
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Not Detected Detected
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Your test came back negative, meaning no HTLV-I viral DNA was detected in your blood. This is the expected and healthy result, indicating you are not infected with this retrovirus.

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Human T-Cell Lymphotropic Virus I, II (HTLV-I/HTLV-II), Qualitative
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