Beginner's Guide to Multiple Sclerosis

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"My fingers are numb, should I go see a doctor?" All too frequently, this is the beginning of the journey for a patient with multiple sclerosis. Setting the ball in motion is the first step, but after that, what else should a new (or concerned) patient know about MS?

How do you get diagnosed with MS?

MS falls under the jurisdiction of a neurologist.  The doctor can perform a CAT scan, MRI, lumbar puncture (spinal tap), EEG or EMG/NCV test on the patient to diagnose MS.  Doctors will also look at symptoms and may perform a variety of physical tests and evaluations to help with diagnosis. For more information, see When to See a Doctor.

What does a diagnosis mean?

In order to be diagnosed with MS, there needs to be evidence of damage in at least two separate areas of the central nervous system and evidence that the damage occurred at least one month apart.  All other possible diagnoses also must be eliminated. For more information, see Criteria to Diagnose MS.

What is a lesion?

Lesions are scars (or plaques) that can be seen on MRI scans.  This shows where the myelin – the protective sheath around nerves – has been damaged.  Lesions occur when nerves have been demyelinated.   For more information, see What is a Lesion?

What is my prognosis?

MS is not terminal and in most cases, MS patients have the same life-expectancy as someone who does not have MS. In reality, only about 25 percent of MS patients need a wheelchair full time.  Unfortunately, though, there is no cure currently.  However, there are some studies going on that may change the face of the disease in the coming decades.  For more information, see What Is My Prognosis?

What will tomorrow bring?

Those living with multiple sclerosis know that abilities may dramatically change at any time.  That’s the reality of living with a faulty electrical system. Fortunately, many people living with MS continue to be employed and have a fulfilling family and social life.  Keep a good relationship with your neurologist and be mindful of your overall health.  For more information, see What Will Tomorrow Bring?

What type of MS do you have?

Each person’s MS journey is unique; however, distinct patterns are seen over time.  Some MS types include Primary-Progressive, slowly worsening neurological function; Progressive-Relapsing**,** steady worsening with exacerbations without remissions; Relapsing-Remitting, unpredictable but defined attacks of deficient neurological function. For more info, see Types of MS.

Disability and the EDSS Score

The Expanded Disability Status Scale is used to evaluate a patient’s impairment due to MS on a 10-point scale.  Although the EDSS lacks sensitivity to short-term changes in a patient’s status, it is used extensively in national and international trials to evaluate the effectiveness of therapy. For more information, see Disability and the EDSS Score.

To the caregiver and the MS patients

A diagnosis of MS affects not only the patient, but all members of the family.  To keep your relationships strong, consider these points: be supportive and stay positive; keep communication open and maintain balance; be creative and stay flexible; take care of yourself too; and stay educated and use resources. For more information, see To the Caregiver and the MS Patient.

Need help paying drug bills?

There are assistance programs which help patients obtain their medication at a reduced cost.  These programs are set up to navigate insurance coverage, maximize reimbursement, and lower out-of-pocket costs for the patient so that they gain market share.  Start with Needy Meds or Rx Assist or Rx Outreach. For more information, see Need Help Paying Drug Bills?

How to avoid pain and skin irritation of injections

For subcutaneous (under the skin) self-injections, consider these points to help eliminate some pain and lessen site reactions: Room temperature medication, warm skin is soft, set auto-injector depth, rotate, rotate, rotate, gentle massage, no-drip needle options. For more information, see Tips for Reduced Pain and Skin Irritation When Injecting MS Medications.

Solumedrol for MS exacerbations

Solumedrol, a potent anti-inflammatory steroid, is used as an emergency treatment for acute exacerbations.  It does not affect the course of the disease, but it does shorten the length of a relapse by putting a stop to ongoing inflammation and closing the blood-brain barrier.   For more information, see Solumedrol: It's All the Rage!

Cognitive function and neuropsychology

There are a variety of tests that can be conducted to test cognitive abilities, including those that test speech, intelligence, learning, memory, executive functions, visual perception and word retrieval and language. For more information, see Cognitive Function, Multiple Sclerosis and Neuropsychology.