Guide To Multiple Sclerosis

Welcome to DiagnosisMS.com! If you are newly diagnosed or would like to learn the basics of the disease, its symptoms, and treatment options please read this guide to Multiple Sclerosis and be prepared.

 

WHAT IS MULTIPLE SCLEROSIS?

Multiple Sclerosis (also known as MS) is a disease with no known cure or cause. It is believed to be an autoimmune disease wherein the body’s immune system crosses a weakened blood brain barrier (BBB) and attacks the CNS (Central Nervous System), removing the fatty sheath (Myelin) that protects nerves and eventually destroying them, causing scars. Multiple Sclerosis means “many scars” and refers to the multiple lesions or scars that appear on the brain, brain stem, and spine as they are attacked by the immune system.

While there is no known cause of Multiple Sclerosis there are some factors that appear to contribute to it such as smoking, a vitamin D deficiency, hormones (many pregnant women with MS feel great while many women have their first attack following a pregnancy), viruses (many scientists believe that individuals prone to MS develop it after contact with the Epstein-Barr virus), and veinous abnormalities (a controversial theory exists that twisted or kinked veins may contribute to the disease).

The disease is marked by a decline in ability over the course of one’s life. It is not fatal and generally does not shorten lifespan. However, it does greatly affect ability and quality of life. Multiple Sclerosis affects women more than men at a rate of at least 2:1.  Because Multiple Sclerosis is a disease that can affect the CNS, virtually any part of the body can be affected by the disease. Some symptoms are common to many individuals with MS, but the disease can vary greatly.

A clinical diagnosis of Multiple Sclerosis is typically reached based on MRI results (usually results of individuals with MS indicate at least several lesions) and lumbar puncture (individuals with MS will typically have markedly different spinal fluid than healthy individuals). It is important to find a neurologist that you trust – preferably an MS specialist. Do not be afraid to switch doctors.

A Multiple Sclerosis diagnosis does not mean an end to your career – many individuals with MS continue to work until retirement. However, if you are unable to do so or are considering leaving your job, there are resources available to you.

There are several types of Multiple Sclerosis and more types may eventually be identified:

  • Relapsing-Remitting: This form of MS is the most common and is marked by sudden relapses (also known as exacerbations or “attacks”) followed by a period of remission wherein some ability is usually regained.
  • Primary Progressive: This form of MS is far less common and is marked by a gradual decline in ability rather than the sudden losses that are seen in Relapsing-Remitting MS.
  • Secondary Progressive: This form of MS indicates that an individual began their course of the disease with Relapsing-Remitting and has developed progressive MS. Individuals with Secondary Progressive MS will still have relapses and remissions but will also experience the progressive decline in ability.
  • Progressive Relapsing: This form of MS is a combination of progressive and relapsing-remitting wherein there is a gradual and constant decline in ability as seen in primary progressive MS. There are also periods of sudden losses, followed by a recovery as seen in relapsing-remitting.

 

WHAT ARE SYMPTOMS OF MULTIPLE SCLEROSIS?

Symptoms of Multiple Sclerosis can vary from person to person.  Some common symptoms are:

  • optic neuritis – pain in the eyes and lack of vision – many individuals first learn of their disease after developing optic neuritis
  • muscle spasms – various muscle spasms and cramps around the body – this can occur anywhere from toes to eyelids
  • spasticity – improper tone in the muscles – essentially muscles fail to expand and contract correctly – this can be very painful
  • heat intolerance – also known as Uhthoff’s phenomenon – heat may cause nerve or muscle pain, make you dizzy, exhausted, etc – heat can cause pseudoexacerbations
  • fatigue – while normal fatigue may be enhanced, ms fatigue is in a league of its own – fatigue caused by MS can be debilitating
  • ms hug – ranging from mild to excruciating pain, muscles wrapping around the torso from the shoulders to hips spasm for minutes to days
  • muscle weakness – parts of the body may become very weak because of the demyelination and destruction to nerves connecting to those parts of the body
  • lack of balance and coordination – balance and coordination are more complex than many people realize – MS can cause significant issues with balance and coordination
  • difficulty swallowing – many small muscles are involved with the swallowing process – MS can affect these muscles causing difficulties with swallowing
  • bladder and bowel problems – because MS can affect the many muscles involved in bladder and bowel function, problems with this are common
  • sexual problems – for many reasons, including pain, MS can lead to sexual problems
  • depression – while it may seem natural to feel depressed when faced with this disease, depression itself also seems to be a physiological part of Multiple Sclerosis
  • emotional issues – mood swings can be common with MS – many individuals experience uncontrollable laughing and crying, commonly referred to as “emotional incontinence”
  • nerve pain – simply put, this is an umbrella term for the many types of pain experienced from simple stimuli as a result of MS
  • cognitive dysfunction – from “brain fog” to difficulty learning – following onset of MS, individuals may experience cognitive problems
  • vertigo – dizziness and spinning – this is a common symptoms and was my first indication that I had Multiple Sclerosis
  • numbness and tingling – these symptoms are more unsettling than they sound – “tingling” can sometimes feel unbearable
  • foot drop – difficulty or inability to lift your foot when walking

Symptoms of Multiple Sclerosis can be treated in many different ways and are often treated by specialists other than your neurologist. Optic Neuritis may be treated with steroid drops by your eye doctor. Many muscle issues may be treated with muscle relaxers like baclofen or diazepam or even with other drugs such as neurotinin. Some neurologists treat fatigue with ADD medications such as Ritalin or Aderol. Difficulty with walking is sometimes treated with Ampyra. Bladder and bowel issues as well as some muscular issues may be treated with botox injections. To deal with depression and other emotional issues, many MS sufferers take anti-depressants such as SSRIs. Vertigo can often be treated with meclizine. Many individuals use medical cannabis to treat multiple symptoms at once. Speak with your doctors about your specific symptoms to find the right solutions for you.

 

WHAT IS A RELAPSE / EXACERBATION / MS ATTACK?

A relapse (aka exacerbation or MS attack) is an event wherein a demyelinated (unprotected) nerve is damaged by the Central Nervous System. Many relapses are silent – meaning that they go unnoticed. However, they are often discovered when an individual finds that they are experiencing paralysis or blindness. It is common practice to determine that an individual is experiencing a relapse when a new symptom occurs for more than 24 hours.

Relapses are typically treated with steroids – this may  mean a round of oral steroids but is more commonly a 3 – 5 day course of steroid infusions. These steroids reduce inflammation and speed recovery. When disability occurs with a relapse, it is typically believed that any healing and recovery will occur within the year following the relapse. Relapses may last for minutes or sometimes for months.

Relapses differ from symptoms in that symptoms are daily and often constant issues that accompany the disease whereas a relapse is caused by specific damage to the Central Nervous System.

 

HOW IS MULTIPLE SCLEROSIS TREATED?

Relapsing-Remitting Multiple Sclerosis can be treated with several different drugs. Treatments for Multiple Sclerosis are all Disease Modifying Drugs (DMDs) – this means that they alter, or slow, the course of the disease. These treatments do not cure or reverse damage done by the disease. The goal of treatment is to slow the rate of disability in individuals with MS. Drugs on this list reduce the rate of relapses in RRMS by 28% – 68%, but each drug is not for everyone and all of them have risks. The list of side effects here for each drug is incomplete – read material given to you by your neurologist carefully when making a choice. Choose your medication with your neurologist’s help and be aware that these drugs are extraordinarily expensive – your insurance company may leave with an exorbitant copay. In these cases there are many programs to help individuals receive medication who could not otherwise afford it. Choose your drug and then learn what your financial options are. New drugs are currently waiting for FDA approval and will be added here as they become available.

Avonex (interferon beta-1a)

Taken once per week via intramuscular (into the muscle) injection in a 30 mcg dose. Created by Biogen Idec and approved by the FDA in 1996.

Side effects:

  • flu-like symptoms following injection
  • depression
  • mild anemia
  • liver abnormalities
  • allergic reactions
  • heart problems

Betaseron (interferon beta-1b)

Taken every other day via subcutaneous (under the skin) injection in a 250 mcg dose. Created by Bayer Healthcare Pharmaceuticals Inc and approved by the FDA in 1993.

Side effects:

  • flu-like symptoms following injection
  • injection site reactions
  • allergic reactions
  • depression
  • liver abnormalities
  • low white blood cell counts

Copaxone (glatiramer acetate)

Taken daily via subcutaneous (under the skin) injection in a 20 mg (20,000 mcg) dose. Created by Teva Pharmaceuticals Industries Ltd and approved by the FDA in 1996.

Side effects:

  • injection site reactions
  • vasodilation (dilation of blood vessels)
  • chest pain
  • a reaction after injection (can include anxiety, chest pain, palpitations, shortness of breath and flushing lasting 15 – 30 minutes)

Extavia (interferon beta-1b)

Taken every other day via subcutaneous (under the skin) injection in a 250 mcg dose. Created by Novartis Pharmaceuticals Corp and approved by the FDA in 2009.

Side effects:

  • flu-like symptoms following injection
  • injection site reactions
  • allergic reactions
  • depression
  • liver abnormalities
  • low white blood cell counts

Gilenya (fingolimod)

Taken daily via oral capsule in a .5 mg dose. Created by Novartis Pharmaceuticals Corp and approved by the FDA in 2010.

Side effects:

  • headache
  • flu
  • diarrhea
  • back pain
  • liver enzyme elevations
  • cough
  • slowed heart rate following first dose
  • infections
  • swelling in the eye

Rebif (interferon beta-1a)

Taken three times per week via subcutaneous (under the skin) injection in a 44 mcg dose. Created by EMD Serono Inc and Pfizer Inc and approved by the FDA in 2002.

Side effects:

  • flu-like symptoms following injection
  • injection site reactions
  • liver abnormalities
  • depression
  • allergic reactions
  • low red or white blood cell counts

Tysabri (natalizumab)

Taken every 4 weeks by IV infusion in a 300 mg dose. Created by Biogen Idec and Elan Pharmaceuticals Inc and approved by the FDA in 2006.

Side effects:

  • headache
  • fatigue
  • urinary tract infections
  • depression
  • lower respiratory tract infections
  • joint pain
  • chest discomfort
  • allergic or hypersensitivity reactions within 2 hours of infusion (dizziness, fever, rash, itching, nausea, flushing, low blood pressure, difficulty breathing, chest pain)
  • liver abnormalities
  • possibility of contracting PML

Only one FDA-approved drug exists for the worsening of RRMS and progressive MS:

Novantrone (mitoxantrone)

Taken four times yearly by IV infusion with a lifetime dose limit of 8 – 12 doses over 2 – 3 years. Created by EMD Serono Inc and Immunex Corporation and approved by the FDA in 2000.

Side effects:

  • blue-green urine 24 hours after administration
  • infections
  • bone marrow suppression (fatigue, bruising, low blood cell counts)
  • nausea
  • hair thinning
  • bladder infections
  • mouth sores
  • possible liver and heart damage

 

WHAT ARE SOME COMPLIMENTARY AND ALTERNATIVE MEDICINES (CAMSs) FOR MULTIPLE SCLEROSIS?

While no therapy has been proven to cure Multiple Sclerosis, there are some commonly practiced therapies that many individuals swear by to improve quality of life. I will add more to the list as they become known.

  • massage
  • acupuncture
  • meditation
  • vitamin D
  • Evening Primrose oil
  • Fish oil
  • exercise (exercise does have proven benefits)
  • diet
  • cannabis
  • yoga