Notes from patients submitted historyI recently saw a new 22-year-old patient who, soon after
her 9th birthday, during 1999 became very ill unable to go to school with the following symptoms:
• Bad abdominal pain with cramping and other IBS type symptoms.
• Motion sickness.
• Hypersensitive to all smells and tastes, forcing her to eat only very bland foods.
• Awful headaches every day.
• Facial pallor.
• Disturbed sleep, bad dreams.
• Sleep apnoea.
• Recurrent sore throat.
• Right leg partially ‘paralysed’ with lower legs going noticeably a purple colour.
• Extremities cold to touch.
• Couldn’t cope with bright lights or noise.
At age 10 after numerous other experts, she saw a paediatrician (a future advisor to "the Chief Medical Officer’s Working Group on CFS/ME") who diagnosed her with an M.E. type illness. His opinion was that she had a good chance of recovery because "she was young - although this might take up to three years"– and that she should be patient.
He suggested Amitriptyline, This drug is often prescribed for almost any condition. (One of my patients became a complete zombie after taking this for a month for tummy aches) as a possible medication to "help with headaches".
At age 11 she developed an unmanageable tic disorder with OCD which she suffered with severely for some 6 years.
An expert paediatrician thought that she might have a PANDAS type autoimmune illness (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). This was on the basis that she harboured antibodies to this bacterium!
Imagine a bacterium causing autoimmune disease and a psychiatric disorder - a perfect recipe for an antipsychotic!
Inevitably, a psychiatrist prescribed her Fluvoxamine and Risperidone. She also became an in patient at various institutions and was also prescribed other psychiatric medications. Her OCD symptoms fluctuated during these years, but in the winter of 2005/06, she became very incapacitated again. [/color]
At age 15 she was admitted to the hospital so that she could be checked by a neurologist for 12 weeks. Her medication was changed from Prozac to Sertraline (200mg) - plus a small amount of Risperidone. She was treated with VegEPA fatty acids, which helped improve some of the circulation in her legs, her tic-disorder, capacity to concentrate on mental tasks and OCD. However, her attendance and capacity for work were still seriously affected by her physical illness.
Another expert gave her a course of antibiotics "in case she was still being affected by the strep bacteria that generate PANDAS type antibodies". She persevered with this for several weeks but stopped due to bad indigestion with nausea. She was then offered a course of anti-virals for the next winter, but did not pursue this due to concerns about the side effects and not wanting to be made to feel too ill to go to college.
Furthermore, she experienced gait problems due to a leg length discrepancy diagnosed by a podiatrist at 15, and she was fitted with custom orthotic insoles to wear in her shoes (to balance her leg length) and a physiotherapist advised her about exercises for her posture/core strength.
Despite all that, her headaches and jaw pain have often been a debilitating daily problem.
Finally, at last, for the first time, she was seen by a maxillofacial surgeon who diagnosed her with TMJ dysfunction but went on to extract her four impacted wisdom teeth, which made her quite unwell, and she thinks brought on a bad relapse with a flare-up in the following symptoms:
• Her energy levels, which improve in the evening, but in the mornings, got much worse.
• She experiences debilitating post-exertional malaise delayed by some hours.
• She says that her score is what is known as moderately affected at 60% (or 70%) on the M.E. Functional Ability Scale
• Chronic headaches (can be severe) with daily jaw/facial pain.
• Low blood pressure and orthostatic intolerance. She cannot tolerate being in hot places very well.
• Muscle and joint pain with deep aches, noticeably sore trigger points, some stiffness.
• Slow gut movement with constipation and other fluctuating IBS type symptoms
• Occasional nausea if over-tired.
• Recurrent sore throats with bad breath and tender/swollen lymph nodes in the neck.
• Bad sinusitis with colds. Some hay fever.
• Bad period pains, for which she takes Mefenamic acid capsules.
• Some urethral discomfort and vaginal sensitivity.
• Some skin problems, outer ear infections, dandruff, peeling flaky skin, toenail fungus and white furry tongue.
• Sun-light induced pin-blister eczema.
• Cold extremities while blood pooling in legs after sitting/standing in one place for any length of time.
• Low blood pressure, generally around the 90/60-70 range, but can be lower. These symptoms improve towards evening time.
• Her heart rate noticeably increases when she stands from a lying-down or a sitting position. She also gets heart palpitations.
All these symptoms have remained chronic and very debilitating since she first became ill. They flare up badly when she has a virus. She has always experienced a lot of facial pain – often with deep jaw pain, particularly when she wakes in the morning. In 2009, her dentist noticed some wear on her teeth which she thought was caused by nighttime jaw clenching, and she was given a mouth guard, but it was too uncomfortable to use. Her muscles around the jaw are too prominent, tight and painful when palpated. She was given cortisone injections twice to ease the inflammation, a better custom-made mouth guard (with muscle relaxants at night for a short while), then some facial physiotherapy.
Her muscles did not really improve so last summer she agreed to try a Botox injection on the worst side (right-side masseter muscle) which gave her some temporary relief. Since then, there has been some improvement in her jaw pain. She can also open her mouth to a better degree than before. She still uses her mouth guard, and she has been trying to use relaxation techniques every day.
This story was abbreviated from 10 full typed pages submitted by the patient. Patients such as these need to be referred to a dentist at the earliest opportunity and not monopolised by the medical or psychiatric professions who have almost nothing to do with them or ANY of their symptoms from the outset in more than 90% of the cases. Those labelled with 'ME/CFS' appear to get the highest number of symptoms and also the greatest severity, mainly because their earliest symptoms are not correctly attended to at the inception of the illness.
Alarmingly, at present there is a concerted drive going on to label this 'jaw problem' (ME/CFS/Fibromyalgia by the medics) into another 'autoimmune disease' WHERE THE MOTIVE IS TO PROFIT FROM PATIENT MISERY rather than provide any relief!
This patient repeats time and again that her jaw really hurts, but no one pays any attention but bulldoze on with useless expertise and drugs, making her condition worse with each passing day.
These patients need the earliest attention to correct their jaws and the Atlas vertebra as explained in numerous places on this forum so that they can return to school or work and live a normal life instead of being driven into crippling illness costing the patients 'life and limb' and the rest of the public billions of pounds in National Health Service costs.
The NHS is bankrupt and has massive waiting lists because it is full of "experts" who have no knowledge about the illnesses that they are "experts in".
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