Motor Neuron Disease (MND)- Status & Blog

Medical Daignosis -

Doctors - Dropped Foot. Bllod Tests

Pysiopherapy - physical mobility tests

Specialists - Physical Mobility Test, (Xray - not used), (Ultrasonic Scan - not used),Nuclear Magenetic Resonance Imaging, Electronic Signals Strength Test (Needle test)

Expert - Physical Mobility Test, Blood Tests (blood analysis - state of organs, blood chemistry),Genetic Coding Tests (determine genetic fault & gene responsible), Lumber Puncture (spinal fluid analysis, bio markers)

 

No Cure yet -

Riluzole drug may slow up dfisease but is not a cure

Some patients including the patient in this websites Blog do not like taking Rilutek (Riluzole) for long because of the effects & stop taking it

 

Best way forward ?

Gentic Coding research linked with Stem Cell research

Freezing motor neurons stem cells to grow new motor neurons is listed as being being tried on the internet

New people with new ideas not just medical

 

Rilutek product - contains active ingredient Riluzole. which acts on the nervous system The drug is used in film coated tablet form. Dosage taking at start is 50 mgx 2 times per day.

It is used in patients with Amyotrophic Layeral Sclerosis (ALS)

Results experienced - See Blog

Side Effects experienced - See Blog

 

Any side effects report to your doctor.

 

Rilutek Possible Serious  Side Efects Listed - fever - decreases white blood cells immune system weakened, Yellowing of skin & eyes (jaundice), itching all over, feeling sick all may be sign of liver disease (Hepatitimay be signs of lung disease (Interstitial lung diease)s).Cough, difficulties in breathing

 

Rilutek Possible Other Side Efects Listed - tiredness,feeling sick, increased blood levels of some enzymes of the liver (transaminases), dizziness, sleepiness, headache, numbness or tingling of the mouth,increase in heartbeat, abdominal pain, vomiting, diarrhoea, pain,

 

Rilutek Uncommon Side Efects Listed - anaemia, allergic reactios, inflamation of the pancreas (pancreiattis)

 

Rilutek is not to be taken if patient has an allergy to it , liver disease, pregnant. breast feeding

 

PEG (Percutaneous Endoscopic Gastrostomy)

Fitting of a short tube into the stomach lining through the stomach wall guided by an endescope with a camera inserted down the throat

The tube is secured by a flat retention disc inside the stomach & outside the body by a flat positioning retention plate. A tube fixing is fitted to the external plate then a tube is fitted to the fixing then a tube clamp is fitted along the tube for restricting the flow of liquids then a syringe applicator for nutrients & medicines injection is fitted at the external end of the tube.

Who ? does it - Endoscopy nurse ?

What ? do they do -  insert the PEG tube into the stomach

Where ? do they do it - in a surgery serving the endoscopy ward

When ? do they do it - day 1 / day 2 / day 3

How ? do they do it - use flexible iragated endoscopy light source probe with camera on the end

Why ? syringe applicator for nutrients & medicines injection directly into the stomach in case of significantly reduced respiratory function & swallowing function control increasing the probability of choking or unable to breathe or difficult to  feed by mouth

 

Operation anaesthesia - local

Operation duration 20 to 30 minutes

Pain control - local anaesthetic & pain killers

Discomfort - yes can feel movement & concious

Operation after effects - soreness, leaks from inside, bleeding

 

Patient - will not cure medical condition or disease

 

Problems - discomfort / soreness / pain / reaction / rotation of internal disc & pushing of tube in & out

 

Risks - low for most patients but patient condition medical assessment critical

 

Carer Duties - nutrients & medicines & PEG tube parts

 

Nutrients & medicines injection

 

Nutrients Stock - storage environment & stock control

 

Patient PEG insertion area cleaning - critical

 

PEG fixings / tube / injection applicator cleaning & servicing - critical