MS Diagnosed As Carpal Tunnel Syndrome

Distinguishing between the symptoms of multiple sclerosis (MS) and those of other conditions can be difficult at times. One year after I was diagnosed with MS, I began to experience problems with both of my hands. They became clumsy, painful, stiff, tingly, and numb, while my forearms were painful. I initially suspected MS because symptoms that had led to my eventual MS diagnosis included weakness and numbness in my left arm, hand, and last two fingers.

But this presumed MS attack was somewhat different. It affected both hands and caused pain in my fingertips that made touching anything — like piano keys or a computer keyboard — excruciatingly painful. I was dropping things and couldn’t continue to do the things I loved and needed to do.

My neurologist examined me carefully. He checked my strength, coordination, and reflexes. He flicked my middle fingernails looking for the Hoffmann reflex. He tapped the area over my wrists (Tinel’s test) and had me hold my hands in a reverse prayer position (Phalen) to see if either maneuver elicited additional tingling or numbness in my fingers. None of these tests are definitive, but they can be helpful in diagnosing carpal tunnel syndrome (CTS).

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Weakness, Numbness, and Tingling in My Hands: Is It MS or Carpal Tunnel Syndrome?

Can a Brain Tumor Be Confused With MS?

Diagnosing multiple sclerosis is not as easy as undergoing an MRI scan and having a neurologist watch you walk; instead, it is a challenging process, and neurologists want to get it right. One thing that was considered even before I underwent MRI scans in 2000 for optic neuritis was the possibility of a brain tumor. It turned out not to be a tumor, but I wasn’t diagnosed with MS at the time, either. Over the years, several patients have reported similar “not a brain tumor” diagnoses when telling their MS stories.

Can a brain tumor be confused with MS?

An extremely rare form of multiple sclerosis, called tumefactive MS, involves brain lesions that look like tumors. These lesions are usually larger and more aggressive than normal MS lesions. Treatment usually begins with high-dose intravenous corticosteroids (e.g., Solumedrol) followed by disease-modifying therapies for MS and symptomatic treatments.

In a recent study, researchers investigated the unusual concurrence of MS and brain tumors. They point out, however, that it is difficult to determine whether brain tumors in MS are more common than in the general population. People with MS undergo more MRI scans than healthy individuals, thus the diagnosis of brain tumors in MS patients may appear to be more frequent (Platone et al. 2015). But not all cancer-related brain tumors appear large; they can also look like multi-focal enhancing white matter lesions which are the hallmark of MS.

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Lymphoma May Be Confused For Multiple Sclerosis

Misdiagnosis and Multiple Sclerosis

Diagnosing multiple sclerosis is not a simple process, and even experienced doctors make mistakes. Even with improved testing tools and more detailed diagnostic criteria, MS misdiagnosis remains an important problem in neurology, with significant consequences.

Misdiagnosis is too common in MS

Rates of MS misdiagnosis range from 6 percent to 35 percent, based on a number of studies published between 1985 and 2005. There are several possible diseases that a person misdiagnosed with MS might have instead. Two of the most common missed diagnoses in these studies were psychiatric disease (23-27 percent) and migraine (9-10 percent).

In a more recent study (Solomon 2012), 95.1 percent of neurologists surveyed (n=122) had evaluated a patient, previously diagnosed with MS by another provider, who they “strongly felt did NOT in fact have MS.” Within the preceding year 39.7 percent of respondents estimated that they had seen three to five such patients. More than one-third (34.4 percent) reported seeing six or more misdiagnosed patients in the last year, including 20 (17.2 percent) respondents who had seen 10 or more such patients.

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Problems with Misdiagnosis of MS: But I Have ALL the Symptoms of MS!!

Living with MS for 10-15 Years So Far

Fifteen years ago, I became blind. In under two days, I went from ‘something is just not right’ to ‘all I can see is solid gray.’ It was terribly frightening and I wasn’t sure what to expect for the future.

One thing I knew at that time was that I did not have multiple sclerosis because my brain was clear of ‘white spots’ or lesions. I also didn’t have a brain tumor. I could walk just fine, so I probably didn’t have neuromyelitis optica (NMO) either. This was before the blood test was available to look for NMO markers to make diagnosis easier, but I was to return to the neuro-opthalmologist if I had trouble.

It was a busy March concert season with performances and rehearsals scheduled on more days than not. My calendar was a mess of scribbled notes regarding where and when I had to be in specific locations for work. There was the Baltimore Opera, Fairfax Symphony, National Gallery of Art Orchestra, and other freelance gigs. All of that on top of the 30+ private music students I had at the time.

I was busy, to say the least, and didn’t have time to mess with physical weakness or logistical limitations.

Figuring out how to get around to where I needed to be took a little bit of time since I wasn’t really safe to drive long distances. I felt like I could manage driving the two miles it took to go from my apartment to the school where I taught and I arranged to carpool to rehearsals and performances.

The same day I reached complete blindness in the right eye, I was almost late to a rehearsal in Baltimore. I had been waiting in line for much too long to have blood drawn for testing to help determine what might be going on. I apologized to the contractor for my almost tardiness. In professional settings, if you are not 20-30 minutes early, you are late!

Did I explain what was going on? No. I kept quiet about my struggles except to my new carpool buddy and one fellow horn player. My colleagues and students were left in the dark about my new challenges. But looking back, I must have been a mess with steroid poof, dark eyes, fatigue, bumping into things, etc.

When I talked with my friend, the horn player, she told me that her mother has lived with MS for years. Bless her heart, my friend did not tell me anything which would have scared the living daylights out of me - although I wasn’t seeing half of daylight anyhow - when she could have. She spoke with the wisdom of someone who has loved someone with MS for many years. Thank you, Jennifer.

After my vision returned, I went on with life blissfully for several years. But when I began to feel numbness and tingling in my left hand and arm, and eventually lost use of the same, I knew that my luck had run out. I had not managed to escape the grips of multiple sclerosis afterall.

Ten years ago when I was once again referred for MRI scans, I knew what they would show. I knew that this time there would be ‘white spots’ or lesions. This time the answer would be clear. It was, but that didn't prevent me from needing a spinal tab and further MRI scans. All told, it still took another five months before the news became official - You have MS.

So now that I’ve been living with MS, officially, for ten years, I try to speak with the wisdom of my friend Jennifer. It’s good to share information and support with those who are facing diagnosis and an uncertain future. It’s also good to simply offer an empathic ear to listen to the fears and concerns of others.

Even those of us who have lived with this disease for many years still do not know what the future holds for us. Right now, my future looks good. I’ve found a treatment regimen which works and keeps me functioning at a high level. I will never be able to do many of the things I once did, but that’s okay. I’m doing many other things which I never dreamed of through advocacy and outreach.

Life is different than I had dreamed and was working towards 15 years ago. But I bet that is true for anyone, regardless of disease. Life is an evolving experience and we are here to discover a path and live it to its fullest.


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Anniversary of an Early Non-Diagnosis and Living a Fulfilling Life

Cancer Mistaken For RA in Children

Musculoskeletal pain and nonspecific symptoms are often the initial signs of cancer in about 20% of children who develop pediatric leukemia.  Because of similar symptoms, childhood leukemia can masquerade as juvenile idiopathic arthritis, osteomyelitis, transient synovitis, or septic arthritis, resulting in delayed treatment.

What is leukemia?
Leukemia is a type of cancer that causes bone marrow to produce large numbers of abnormal white blood cells that enter the bloodstream and do not function properly.  Leukemia accounts for 33-41% of all malignancies in children under 15 years of age with approximately 3250 children diagnosed each year in the United States.

Each type of leukemia is named for the blood cell that’s affected.  The four most common types of leukemia are acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), chronic myeloid leukemia (CML), and chronic lymphocytic leukemia (CLL).  Acute lymphoblastic leukemia (ALL) represents about 75-85% of all cases of childhood leukemia and is the form which is known to mimic arthritis.  Symptoms are often vague and nonspecific.

Common leukemia signs and symptoms include:
    •    Fever or chills
    •    Persistent fatigue, weakness
    •    Frequent or severe infections
    •    Losing weight without trying
    •    Swollen lymph nodes, enlarged liver or spleen
    •    Easy bleeding or bruising
    •    Recurrent nosebleeds
    •    Tiny red spots in your skin (petechiae)
    •    Excessive sweating, especially at night
    •    Bone pain or tenderness
    •    Hematological abnormalities (anemia, low white blood cell count, low platelet count, circulating blasts)

How does leukemia look like juvenile arthritis?
Musculoskeletal symptoms are the primary complaint in 14% to 30% of pediatric ALL cases, sometimes before changes in peripheral blood are evident.  Several case reports exist in the medical literature discussing patients who are initially (mis)diagnosed with juvenile idiopathic arthritis (JIA) due to bone pain and joint swelling, often in the lower extremities (ankle, knee, hip), to later be diagnosed with ALL.  About 7% of children with ALL who initially have musculoskeletal manifestations meet diagnostic criteria for JIA.

What are the best ways to distinguish leukemia from arthritis in children?
Studies have identified three important features that predict a diagnosis of ALL and differentiate it from JIA, including:
    •    Low white blood cell count (leukopenia)
    •    Low-normal platelet count (thrombocytopenia)
    •    Nocturnal pain


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Childhood Leukemia Mistaken for Juvenile Rheumatoid Arthritis

Diseases Easily Confused with RA

Making a diagnosis of rheumatoid arthritis is often tricky. With no single test that confirms or eliminates the disease, the diagnosis of RA is based on a physical exam, patient history, laboratory tests and often imaging. However, symptoms of RA, such as pain, swelling and fatigue, are not exclusive to the disease. And correct diagnosis is important in choosing an appropriate treatment plan.

A number of diseases, such as lupus, fibromyalgia or Sjögren’s syndrome, may easily be confused with RA, or coexist in a patient. Arthritis symptoms might develop following certain infections, such as Lyme disease, tuberculosis, gastrointestinal infection or sexually-transmitted diseases. Patients with certain cancers, such as large granular lymphocyte (LGL) leukemia, have an increased incidence of RA, and acute leukemia in children may even be misdiagnosed as idiopathic juvenile arthritis.

In addition to the conditions mentioned above, here are seven diseases that could be misdiagnosed as rheumatoid arthritis:

Osteoarthritis (OA)

Osteoarthritis is the most common condition misdiagnosed as rheumatoid arthritis, according to a recent Colombian study. Of 2,478 patients referred by general practitioners to a specialized center with a presumed diagnosis of RA, it was found that 993 patients (40.1%) had been misdiagnosed. The correct diagnosis in 65 percent of the misdiagnosed patients was osteoarthritis (12).

Potentially confused with seronegative RA, inflammatory osteoarthritis is an aggressive, erosive subtype of primary osteoarthritis that affects 5 to 10 percent of those with OA. The periodic inflammation results in knobby, painful, inflamed knuckles and fingers, while the wrists and metacarpophalangeal joints are not involved. As a form of OA, blood tests show no increases in erythrocyte sedimentation rate (ESR) or C-reactive protein, and antinuclear antibody and rheumatoid factor testing will be negative (7).

Reactive arthritis (ReA)

Reactive arthritis (ReA), formerly called Reiter’s syndrome, is an autoimmune condition that develops in response to an infection. It has been associated with gastrointestinal (GI) infections with Shigella, Salmonella, Campylobacter and other organisms, as well as with genitourinary (GU) infections (especially with chlamydia trachomatis) spread through sexual contact. Symptoms, which may include arthritis, conjunctivitis, or urethritis, usually occur about one month following infection. ReA affects more men than women.

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Conditions that Resemble Rheumatoid Arthritis