Being diagnosed with multiple sclerosis, a disease in which the immune system eats away the protective coating (myelin sheath) of the nerves, does not mean a patient is given all of the information they need to first navigate their way through the early stages of the disease. Many patients report coming home confused and overwhelmed when first diagnosed. Some state they are very frightened, because they do not know what to expect.
I recorded a three part series on my radio show MS & Me Interviews which focused on questions we received from newly diagnosed patients. I hope the answers provided and additional information provided below begins to ease the fear of uncertainty.
Here is some additional information:
Here are 50 of the most common MS symptoms:
Sensory problems
- Abnormal sensations (dysesthesias)
- Numbness, tingling, burning, or tightness
- Pins and needles
- Severe itchiness (pruritus)
- Hypersensitivity to touch
- Pain – acute or chronic, mild to severe
- Loss of proprioception (sense of body position in space)
- Inability to detect vibrations
- Impaired sense of taste or smell
- Trigeminal neuralgia – stabbing pain in the face
- L’Hermitte’s sign – electrical shock-like sensation running down the spine and into the limbs when you bend your neck forward or backward
- The MS hug
Motor problems
- Loss of strength or muscle weakness
- Loss of muscle tone (hypotonicity) or increased muscle tone (hypertonicity)
- Spasticity – continuously contracted muscles and/or muscle spasms
- Myoclonus – sudden involuntary muscle contractions
- Tremor
- Foot drop
- Problems walking, impaired gait, or mobility problems
- Paralysis
- Loss of balance
- Loss of coordination (ataxia)
Cerebellar ataxia can cause:
- Gait ataxia – uncoordinated walking
- Nystagmus – jittery eye movements
- Intention tremor – shaking when attempting fine motor movements
- Hypotonia – inability to maintain a steady posture
- Dysdiadochokinesia – inability to maintain a steady rhythm
- Dysmetria – reduced control of range of movement resulting in over- or under-shooting limb movements
- Dysarthria – changes in speech production, including slurring, unclear articulation of words, and difficulty controlling loudness
- Dysphonia – changes in voice quality, including hoarseness, breathiness, nasal tone, and poor control of pitch
- Dysphagia – difficulty swallowing
Vestibular ataxia can cause:
- Loss of balance
- Vertigo – dizziness, nausea and vomiting
- Nystagmus – jittery eye movements
Sensory ataxia results in:
- Loss of body position sense (proprioception)
- Inability to detect vibrations
- Romberg’s sign
Vision problems
- Optic neuritis – loss of vision, eye pain, diminished color vision
- Diplopia – double vision
- Blurred vision
- Flashes of light in peripheral vision
Hearing problems
- Hearing loss
- Tinnitus – ringing in the ears
- Hyperacusis – abnormal sensitivity or intolerance to everyday sound levels or noise
Cognitive changes
- Short and long-term memory problems
- Attention difficulties
- Slower speech or information processing speed
- Problems with abstract conceptualization
- Difficulty finding the right words
- Confusion or sensory overload
Emotional changes
- Depression
- Generalized distress and anxiety
- Mood swings or emotional lability
- Pseudobulbar Affect (PBA)
Bladder, bowel, or sexual problems
- Urinary incontinence, hesitancy, urgency, frequency, retention, or leakage
- Constipation, diarrhea or bowel incontinence
- Impotence, reduced libido, or inability to achieve orgasm
- Reduced genital sensation or vaginal dryness
Sleep disorders
- Insomnia
- Narcolepsy
- Restless leg syndrome (RLS) or nocturnal movements
- Sleep disordered breathing
Other symptoms
Fatigue – Fatigue is one of the most common symptoms of MS, occurring in about 80 percent of people. Lassitude — is unique to people with MS. Researchers are beginning to outline the characteristics of this so-called “MS fatigue” that make it different from fatigue experienced by persons without MS.
- Generally occurs on a daily basis
- May occur early in the morning, even after a restful night’s sleep
- Tends to worsen as the day progresses
- Tends to be aggravated by heat and humidity
- Comes on easily and suddenly
- Is generally more severe than normal fatigue
- Is more likely to interfere with daily responsibilities
- Headache and migraine
- Breathing problems
- Heat sensitivity
- Problems regulating heat and cold
- Paroxysmal symptoms
- Seizures
Medication Copay Assistance
Aubagio
$0 copay program and your own dedicated nurse with a direct extension.
1-855-676-6326
Avonex
$0 copay program with no income requirements and no enrollment time limit. Free drug program for eligible patients in need.
1-800-456-2255
Betaseron
$0 copay program covers up to $14,500 in copay assistance each calendar year. Beta BRIDGE program covers the cost of medication while you are between insurance plans.
1-800-788-1467
Copaxone
$0 copay program with no paperwork required.
1-800-887-8100
Extavia
Copay program covers up to $600 each month and $7,200 each year. Patient assistance program provides free medicine to low-income, uninsured patients.
1-866-398-2842
Gilenya
$0 copay program and assistance with the cost of medical tests before you start the treatment.
1-800-445-3692
Glatopa
$0 copay program covers up to $9,000 per year.
1-855-452-8672
Lemtrada
$0 copay program and reimbursement up to $100 per day for charges related to the administration of your infusion.
1-855-676-6326
Ocrevus
$5 co-pay up to $20,000 per 12-month period for medication. Copay for infusion administration costs is $5 per infusion, up to a $500 daily limit, in each 12-month period.
1-844-627-3887
Plegridy
$0 copay program with no income requirements and no enrollment time limit. Free drug program for eligible patients in need.
1-800-456-2255
Rebif
$0 copay program if you have insurance or free medication program for one year if you are uninsured.1-877-447-3243
Tecfidera
$0 copay program with no income requirements and no enrollment time limit. Free drug program for eligible patients in need.
1-800-456-2255
Tysabri
$0 copay program and infusion copay assistance up to $100 per infusion in certain states.
1-800-456-2255
Cooling Vests
MSAA – Cooling Distribution Program
https://mymsaa.org/msaa-help/cooling-products/
MS Foundation – Cooling Program
https://msfocus.org/Get-Help/MSF-Programs-Grants/Cooling-Program
Equipment & Assistance Grants
MS Foundation
https://msfocus.org/Get-Help
MSAA
https://mymsaa.org/msaa-help/assistive-equipment/
MS Society of Canada
https://mssociety.ca/support-services/programs-and-services/29/quality-of-life-grant-equipment-atl
