• Cybersurgery

• Jargon Buster

• Links to other web sites

• Poems by Beverly are included in the Poetry section

JARGON BUSTER
 

INFORMATION ABOUT MG & ASSOCIATED ACRONYMS

This list of information was compiled to explain in layman?s terms, some of the names and acronyms used for various treatments and diagnostic tools used in the treatment and diagnosis of our illness.  It can be so confusing if you are new to MG and people start using terminology like ?IVIG?, hopefully this list will go some way to simplifying these terms If you require a more complete description, please consult your physician.

MYASTHENIA GRAVIS

Myasthenia Gravis is derived from two words one Greek and the other Latin.

Myasthenia comes from the Greek and means ?muscle weakness?

Gravis comes from the Latin and means ?severe?

IVIG

IntraVenous ImmunoGlobulin  - this is a treatment used to treat MG as well as some other auto-immune diseases.  It involves transfusing Immunoglobulins which is a component of blood that carries ?healthy? antibodies taken from donors and protects the recipient and boosts his/her immune system.  The exact effect is not fully understood, but it is believed it also reduces the production of auto-antibodies which attack the host such as patients with MG.

PLASMA PHERESIS

Plasma Pheresis also known as Plasma Exchange, is carried out using a machine which looks not dissimilar to a dialysis machine.  Blood is removed via one cannula (tube) and the ?clean? blood is returned via another cannula.  The machine processes the blood using a centrifugal pump, which separates the components of the blood and the plasma, which contains the auto-antibodies (bad guys) is removed and replaced by a mixture of human albumen (another component of blood) and saline solution.  In most cases the treatment is given by the use of cannula inserted on the day, but when patients have ?poor? veins or the patient is in Myasthenic Crisis, this may require the insertion of a Central Line for the course of the treatment and requires a minor surgical procedure.

CELLCEPT

Cellcept also known as Mycophenolate mofetil is a drug used originally as an Immuno-suppressant after transplant surgery.  Tests are being carried out for its use as a form of treatment for MG and to date, the results have been favourable.  It was chosen as a test drug, because it is believed to have fewer side effects than some of the drugs in current use and allows the reduction of these drugs and sometimes replaces them completely.

TENSILON TEST

The ?Tensilon? test is sometimes used as a tool for diagnosing MG.  In severe symptoms the effect can be extremely dramatic, with the patient ?recovering? from all the symptoms drooping eyes, difficulty breathing, swallowing difficulties, etc.  Unfortunately the symptoms return within a few minutes after the test.  The drug used in this test is called Edrophonium chloride and is injected into the patient.  This procedure is normally done in a hospital environment due to possible risks.  In ?milder? cases the result might not be so obvious and the test can sometimes be considered as a ?failure?, this does NOT mean that you DO NOT have MG, just that the test was inconclusive, subsequent tests can prove positive.

NEURO or NEURO OPTHO.

List members often refer to their ?Neuro?s? this is simply an abbreviation for Neurologist or Neuro surgeon.  Neuro-Opth is also used and is an abbreviation Neurological Ophthalmologist (no wonder they shorten it)

SERO NEG

Blood tests are taken to confirm the presence of AChR  (Acetycholine receptor) antibodies which cause the  MG and in most cases (approximately 80%) this an effective way of determining that the patient is Myasthenic.  However it has been known that some patients (20%) with MG do NOT have the antibodies to AChR?s and instead make antibodies to another muscle target which has now been identified thanks to the research work carried out at Oxford in the UK by Professor Angela Vincent and her team.  This protein is known as MuSK and a different test (which has been developed) is required.  The people having this second type of antibody to the MuSK protein, are referred to as SERO NEG.  This is a new development and effectively means that with testing now available for AChR antibodies and MuSK antibodies, this gives blanket coverage for all Myasthenics.

MESTINON-PREDNISONE-IMURAN also known as AZATHIOPRINE

The treatment for MG/OMG is normally approached on TWO fronts

1. By increasing the availability of Acetycholine at the Neuro Muscular Joint (NMJ) to maximise the chances of the signal from the nerve reaching the muscle.  A balance must be struck, too much can have the same effect as too little and make matters worse.  The doctors strive to achieve what is known as MRL maximum response level (the same is true of the other drugs used).  The drug used for this purpose is Pyridostigmine bromide better known as MESTINON to MG?ers.

2. By reducing the production of the auto-antibodies which attack the NMJ.  For this the drugs PREDNISONE and or IMURAN (azathioprine) are used.  These drugs are known as IMMUNO-SUPPRESSANTS i.e. they suppress the immune system. Prednisone is a hormone also known as a ?corticosteroid? (which occurs naturally in the body) although when taken in pill form, the dose is at least 20 times more than the body would naturally produce.  To reduce the side effects of this drug, the dosage is taken EVERY OTHER DAY (EOD) or it is used in conjunction with IMURAN to allow the dosage of the PREDNISONE to be reduced.

EMG TEST

Another tool used in the diagnosis of MG is called ?electromyography? better known as EMG.  In one test the muscle response to electrical stimulation of the nerve is recorded.  In a patient with MG the response gets smaller over the first few stimuli.  There is a similar test, which is slightly more refined and is known as the SINGLE FIBRE EMG.  The responses of individual muscle fibres are studied.  Both these tests involve a lot of scary scientific equipment, but the tests themselves are more uncomfortable than painful but you do feel like a guinea pig in an experiment, surrounded by oscilloscopes, electrodes and probes.  Don?t worry it looks a lot worse than it actually is.

CAT SCAN OR CT SCAN

Conventional X-ray techniques have one major flaw, they are two dimensional and overlying organs or tissue can obscure the target site.  If you are for example looking for a brain tumour, surrounding brain tissue blocks the view.  To overcome this, a new form of X-ray machine was developed formerly called a CAT or now known as a CT Scan.  CAT means Computerised Axial Tomography and CT stands for Computed Tomography.  In this process the patient is placed inside an X-ray machine, and a narrow beam of X-rays sweeps across an area of the body, moving through a slight angle after each X-ray pulse.  The resulting series of X-ray images, taken from a different angle, is recorded electronically and analysed by a computer.  From them, the computer produces a three dimensional X-ray image.

CT (computed tomography), or CAT (computerised axial tomography) scanners are specialised X-ray cameras that take highly detailed images of hard and soft tissues.  By picturing one layer of the body?s tissues at a time.  CT scanners can detect very small tumours and other disorders.

MRI SCAN

Nuclear magnetic resonance or Magnetic Resonance Imaging, is a hazard free, non invasive method that uses radio waves in the presence of a strong magnetic field to probe a patient and generate visual images of thin slices of the brain, heart, liver and other organs.  The high contrast, variable-toned images that result can uncover tumours, blood starved tissues and plaques.  In the procedure termed scintigraphy, a small amount of radioactive isotope is introduced into the body.  A scintiscan camera, or gamma camera, measure the uptake and concentration of the isotope in certain tissues, such as the brain, kidney, or thymus gland.  Metabolic diseases and other disorders can be uncovered by this technique.

PLEASE NOTE! Both CT scans and MRI scans do NOT detect the presence of MG, they are merely tools used in diagnostics.  The CT scan eliminates ?other? possibilities for the symptoms we suffer, and the MRI scan is used to check on the condition of the Thymus gland.

THYMECTOMY

A thymectomy is a surgical procedure in which the chest is opened to remove the Thymus gland.  The Thymus gland is responsible from an early age in developing our immune system.  There are two main reasons for carrying out this procedure.

a)      The Thymus gland is found to be abnormal, usually brought about by a tumour (known as a thymoma) which if left to grow, can cause problems with surrounding tissues in the chest cavity.  This tumour, it should be noted, is in a very large majority of patients  ?benign? (not cancerous)

b)      Surgeons will in some cases consider a thymectomy in young or adolescent myasthenics as beneficial to treat MG, particularly the child patients.  This procedure is carried out in adults up to the age of about 45 years of age after which it is regarded as less effective.

The topic of thymectomies causes a lot of controversy among Myasthenics and doctors alike.  I do not intend to advocate or otherwise the efficacy of this procedure, it is best left to the individual and their own physician.

ICE TEST

This is a very simple test used to check on the Ptosis (droopy eye lids) of an MG patient.  An ice cube or cold compress containing ice is held against the eyelids of the patient for two to three minutes.  In a patient with MG, the ptosis (droopy eyelids) will improve and the amount the eyelids can be opened will increase. This test only works on patients with MG and is regarded as another tool in diagnosis as well as having some therapeutic value. 

PRISMS OR FRESNEL LENSES

In a lot of cases, the myasthenic having difficulty focusing can have ?prisms? (also known as fresnel lenses) prescribed.  These can either be ground in to your present eye glass lenses or the more popular ?stick on? type are also available.  Some MG?ers swear by these lenses, while others don?t find them as beneficial.  It?s basically a question of what suits you as an individual

SURGICAL TAPE (CLAVIN TAPE)

In severe cases of Ptosis (droopy eyelids) the use of porous surgical tape to hold up the eyelids is often used.  Although the taped eyelids may look rather strange, the ability to see, makes it very worthwhile and if you wear a pair of sun glasses when going out, this makes it look a lot less obvious.  Props to hold up the eyelids are also available in some cases, these attach to the glasses and help hold the eyelids open.

MEDICAL TERMINOLOGY

Doctors and other medical staff use terminology which most of us as patients find difficult to understand.  I am listing just a few of those which you might find useful if you hear them mentioned in your vicinity.

PTOSIS

Medical term for what we as MG?ers call Droopy eye lids

DYSPHAGIA

This is the medical term for when you have difficulty swallowing.

DISARTHIA

This indicates you have slurred or fatiguing speech

DISPHONIC

Your voice sounds strange.

LARYNGEAL

Connected with the voice

PHARANGEAL

Relating to the throat.

Some of these sound scary until you realise what they mean.

Osserman Classification in Myasthenia Gravis

Many doctors classify your stage of myasthenia using the Osserman Classification system and we include a breakdown of the system used to help clarify these definitions.

The first useful clinical classification system was developed by Osserman and thereafter modified.

0          Asymptomatic

1          Ocular signs and symptoms

2          Mild generalized weakness

3          Moderate generalized weakness, bulbar dysfunction, or both

4          Severe generalized weakness, respiratory dysfunction, or both

or

Stage                            Symptoms

Neonatal           Transient symptoms from myasthenic mother

Juvenile

Adult group I      Localized, usually ocular only

Adult group II     Acute fulminating, bulbar and generalized with respiratory failure

Adult group IV    Late severe, evolving from groups I and II

Adult group V    With muscle atrophy, evolving from group II.

? Brian Houston 2002-2006