Motor Neurone Disease (MND)

Slawomir - Interview 33

Male
Age at interview: 55
Age at diagnosis: 55

Brief outline: Slawomir was diagnosed 3 months ago, 18 months after first noticing weakness in his leg. He wonders if he may in fact have Lyme Disease. He can still walk and drive.

Background: Slawomir is a company director, divorced with 1 son aged 16. Ethnic background/nationality' Polish.

Audio & video

Slawomir first noticed weakness in his right leg about 18 months ago in 2005. Looking back he had also noticed pins and needles in his shoulder 2 years ago and he wonders if it was connected. He went to his GP practice, and the first GP he saw did tests for his thyroid function, but did not feel he needed a referral to a neurologist. Eventually he asked to see another GP in the practice, who referred him to a neurologist, and by this time it was about six months after he first noticed the leg weakness. The neurologist referred him to another hospital for electromyography tests (EMG) and he had to wait four months for the appointment. Then he was told it would be another five months before he could see the neurologist again to get the results. He rang the hospital and managed to get a private appointment the next day, and he was told it was probably motor neurone disease. His original neurologist wanted him to have an MRI, which would have been another long wait, but he paid to have it done privately in Poland, his home country. The diagnosis was finally confirmed three months ago. He has found these delays frustrating.

He used to work as an engineer installing industrial laundries, but with the weakness in his leg and arms it has become almost impossible to work. He is not sure how he will manage financially, and he plans to claim Disability Living Allowance. He is still able to drive an automatic car, but he has not yet been able to obtain a disabled parking badge and a space outside his home. As a result he does not use the car very often because he is worried about having to walk a long way back to the house.

Slawomir's mother has been on an extended visit to this country to help around the house, and his teenage son also helps. His son does not talk much about how he is feeling about his father's diagnosis, but they have a very good relationship together. 

Slawomir is not sure the diagnosis is correct and wonders if it may be Lyme Disease, as he has been bitten by ticks at least twice in the past. Although a test for Lyme Disease came back negative, he has heard of cases where people have tested negative several times and then a different type of test has given a positive result. He spends a lot of time on the internet researching alternative causes for his symptoms, and alternative treatments, which his doctors have been reluctant to prescribe. He takes Cat's Claw, Coenzyme Q10, Silymarin, minocycline, and low-dose naltrexone. He decided not to take riluzole because he did not think the small gain in survival would be worth the possible side effects. He does not want to give in to MND and thinks a positive mental attitude can help. 

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