Ch.1 — the bedroom, Ch.2 — University, Ch.3 — Blue Light, Ch.4 — A&E, Ch.5 — Survival & Ch.6 — Denial.

Rebecca woke up, yawned, turned over and went back to sleep. The stupor of the anaesthetic would take time to wear off. The plastic surgeon had just transferred a large superficial piece of skin from Rebecca’s right thigh to cover the raw area on her left hip. She looked uncomfortable. She was being forced to lie on her right side by a bank of pillows stuffed like giant marshmallows under the left side of her body. The surgeon did want any pressure on the skin graft.

Rebecca’s youth had saved her. She had only needed dialysis for 2 days before kidneys had started to produce copious amounts of urine and her metabolic profile normalised. Her temperature settled and her blood counts returned to normal. The bedsore was debrided and with regular dressings had started to heal rapidly.

With the help of baclofen and clonazepam, antispasmodics, the physiotherapists had worked their magic on her legs. They had straightened them. The fact that she had only recently taken to bed had meant her joints had not frozen-up. Her muscles and tendons had stretched with too much difficulty. The contractures that were present when she was admitted were almost gone. Rebecca would have continued to resist their help if not had been for Moses. Moses was a larger than life Zimbabwean nursing assistant, with a smile as wide as the grand canyon. His joie de vivre was infectious. Moses had managed cajole Rebecca into re-engage with the Universe. It might have been his smile, the gentleness of his hands, or his story. Moses had escaped from Harare after having been tortured by Robert Mugabe’s henchmen. His crime joining an opposition party and attending a political rally. He had managed to get to London via an NHS recruitment campaign in Johannesburg. His enthusiasm and love of life were infectious. Whilst working he would sing acappella in his native Ndebele. His voice was like melted chocolate and its rhythms and gentle intonations had gradually began to lift Rebecca’s spirits. Rebecca’s liked listening to Moses’ African stories. Although they were childlike they stopped her ruminating about MS, the breakup of her marriage and her current predicament. One morning Rebecca had worked herself up into quite a state when Moses had not shown up for work. It was his day off. The relief on finding this out had made her realise she was beginning to care.

Whilst Rebecca was being ventilated she had been assessed by Dr Lerner one of consultant neurologists who specialised in multiple sclerosis. She felt Rebecca’s rapid deterioration must have been due to a relapse. She had ordered an MRI of her brain and spinal cord. Because of her poor renal function at the time she was unable to order a so called contrast enhanced MRI scan. The contrast agent, gadolinium, used for the MRI accumulates in the body in people with poor kidney function. Despite Rebecca being on dialysis the radiologist recommended against using gadolinium. The MRI proved decisive. Despite the lack of contrast the scan showed many lesions in the brain and spinal cord.

After being discharged from ITU, Dr Lerner had come to see Rebecca with her mother. She examined Rebecca and tested her reflexes and sensation in her legs. Dr Lerner had showed Rebecca her MRI scans. She pointed out on the mobile workstation that several of the lesions in her brain had multiple faint rings around them implying they were fresh and likely to be active. There were also several lesions in the spinal cord that were associated with swelling of the spinal cord.

Dr Lerner was emphatic, “these lesions are active and inflammed. They would have only recently developed.” “How recently?” asked Rebecca’s mom. “Probably in the last two to three weeks.” she replied. “Are you going to treat my MS?” whispered Rebecca. “Definitely!”, replied Dr Lerner. “You have very active MS, which explains why you deteriorated so rapidly. I have already asked our pharmacist to start getting all the paperwork in place so that we can start you on a new drug.” explained Dr Lerner. “But my neurologist said I wasn’t eligible for treatment because I was already in a wheelchair.” said Rebecca holding back tears and squeezing her mother’s hand so hard that her knuckles whitened. “I can’t speak to your neurologist’s decision, but the reason you deteriorated so quickly was because you were having multiple attacks with no recovery between them. I am hopeful that if we switch-off the inflammation, your spinal cord will be able to recover some function.” she said. “Do you mean I may walk again?” asked Rebecca trying to suppress her excitement. “I don’t want to raise your expectations too high. It all depends on how much damage the MS has done to your brain and spinal cord. In each MS lesion the inflammation cuts and destroys nerve fibres. We rely on the surviving fibres to take over the function of the lost fibres. Your ability to recover function depends on how many fibres have survived.” replied Dr Lerner.

Rebecca remained silent for awhile digesting the information she had just been given. “The bastard!” she thought. “Why didn’t he, Dr Leicester her neurologist, do an MRI to see if her MS was active? How many other patients like me has he written off without the benefit of treatment?” she wondered.

“Are there any other questions?” asked Dr Lerner noticing that Rebecca had become distracted. “Yes, just one. Should all neurologists be using MRI scans to assess whether MS is active or not?” she asked. “Well it depends.” replied Dr Lerner. “Depends on what?” asked Rebecca. “It depends on their practice and how they manage MS. Not all neurologists manage MS actively. That is they don’t all use MRI for monitoring MS disease activity and for making clinical decisions.” said Dr Lerner not feeling comfortable with this line of questioning. It is never easy explaining variations in medical practice to a patient, particularly when a colleague you know well doesn’t practice the way you do. “Why one doctor does it one way and another doctor a different way is why medicine is an art and not a science.” added Dr Lerner. “I am not sure I understand.” Rebecca interjected. “Surely there must be a standard way for assessing whether or not someone with MS has had a relapse?” she asked. “I am afraid not. The current treatment guidelines we use are mainly based on clinical assessment. Although for natalizumab, the drug I want you to go onto we have been forced by NHS guidelines to confirm that your disease has been active on MRI. I am sure this is to make sure we don’t bend the rules for our patients.” concluded Dr Lerner standing-up to leave the room. “I will ask one of our MS clinical nurse specialists to pop by with some detailed information about natalizumab. We have a very good DVD that explains how the drug works and what to expect from the treatment.” concluded Dr Lerner as she left the room.

Rebecca lay thinking for a long time without saying anything. She was mulling over the good news that she was eligible for treatment. However, she couldn’t help her thoughts coming back to her damaged brain and spinal cord and whether or not she would be able to walk again. The only movement she had in her legs was the ability to roll her hips. She made a resolution to herself that she was going to make Dr Leicester pay. As she mouthed a well rehearsed saying from her french class “la vengeance est un plat qui se mange froide” the tears began rolling down her cheeks. Only this time the tears were those of anger and not sadness.

Ch. 8 — True Lies

Neurologist, researcher, avid reader, ms & preventive neurology thinker, blogger, runner, gardener, husband, father, dog-owner, cook and wine & food lover.