Slawomir - Interview 33
More about me...
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.
He had problems getting referred to neurology and had long waits between appointments. In the end...
So how long was it altogether from when you first started thinking something was wrong to getting to this point?
'Over a year, much over a year. One and - nearly one and a half.
But you know, the speed how they work is - I went to Poland in August - September. I'd been waiting for MRI test here of the spine. They give me about four months to wait. I call them, I call, I find in the Internet somewhere, actually it was in the same hospital but a private company, they could do tomorrow, '1200, on same machine which normally they're doing for rest of them. But it's four months waiting. I went to Poland, I spoke to someone. They called to a hospital - it's again private, private, but most of the jobs there were for sort of NHS in Poland. They call them, and they says if I want I can be there tomorrow at 5.00. And it cost 100, sorry, 500, 500 - 500 Polish Zloty, which is 1 to 6, below '100, which cost '1200 here. And we went there. They did the thing. It was about half an hour, 45 minutes. I ask, 'How long we have to wait?''They say, 'So the result will be ready for Monday, because it's Friday evening.'
I say, I say, 'So I want to go back to England on Monday.' She said, 'I will talk to them.' And I had Cds, two Cds and the photos and everything within less than one hour. And here, results 5 working days.
His mother shouted at him when he told her he might have MND.
My mum only'.It's difficult to cope with her. When I ring her, I call her - I remember I'd been driving and I told her what I suspect. It was I think after the first visit to the neurologist. I say, 'So it's a possibility is that, you know, motor neurone disease, which normally people live two years, and they are dying.' And she shouted at me, say I'm the idiot.
Is that just because she can't bear to think of it?
I don't know. Maybe. Maybe nothing bad can happen to her family.
He takes several supplements and herbal remedies, but also low-dose naltrexone, normally used to...
Now I'm trying cat's claw. But it's without TOA [Tetracyclic oxindole alkaloids].
You mentioned vitamins. What vitamins do you take?
B, E, C, mainly. Coenzyme Q10. Ginseng. Oh, a lot of things. Silymarin. You know what is silymarin? A sort of herb extract, thistle milk. It's silymarin, I think, it's the same. What else?
Are you taking any other drugs, I mean apart from Rilutek?
Yes, just one antibiotic, minocycline.
Are you taking that as part of the trial or just independently?
I asked my GP to prescribe me. Because my neurologist, he refuse everything [laughs] except vitamin E.
How do you feel about the neurologists that you've encountered?
My neurologist? I don't know what he can do. You know, he can do nothing, probably, because they don't know what is this disease. They've got no treatment for it. They don't know what causes it. They know some people have it, they're dying. They could do something, at least they could try. I ask him to prescribe me a few things. He refuses, 'Not proven, not proven, not proven.' Ah-ha, I'm trying to use naltrexone. You know what is naltrexone? It's a drug for alcoholics and drug addicts. It's blocking something in the brain. But I'm trying to use low dose of it, very low. Like normal dose is around 50 to 100 mg. They're using 4', 5 mg per day - per night actually, because you should take in the night. It blocks some receptors in the brain'A lot of people use this thing for multiple sclerosis and it helps them. And my neurologist says, well, he refuse a prescription. I got it private, from somebody else.
So that's a prescription-only drug, that one?
It's prescription, yes.
Right, OK. Where do you find out about all these things? Is it on chat room, forum things?
No. Forums, no. Probably the forums they're controlled by somebody, they won't put this kind of information. At least I know the Polish forum, they won't say anything about this treatment, like LDN [low-dose naltrexone]. They say the same as my neurologist, 'It's not approved, not approved.' They don't want to talk about it, they don't want to try.
He has thought about lots of possible causes. He has spent time near laundry chemicals, but not...
What might cause? Tick bites? Stress? All are possible, all together. And some extra bacterias as well, or virus. Nobody knows what cause this thing. Immune system auto-aggression?
Have you ever been exposed to chemicals, in your work for instance?
As normal. I got some mercury fillings, which I noticed a few days ago. I think I have to remove them. That's all. But a lot of people got them, not only me. And a lot of people, they were exposed to chemicals. For example I used to do work for those laundries. They got chemicals, soap powders. And you cannot imagine what sort of powder is it. It burns the skin. Yes, but I never, you know, the washermen got more contact with it, a lot of people got more. I never touch these clothes there, I just deal with the machinery. Yeah, they got much more contact than me.
His business installing industrial laundry machinery is physically too hard for him now. He is...
Because it was quite physical?
Physical, yes, some of it was physical.
And is that your own business that you've built up?
And that must be very frustrating.
Yes, yes, it's frustrating. People are calling me. They want me to do the job. You know, I've been working everywhere in this country, prisons, hospitals, and you know, everywhere all round the country, for the army base as well, in Portsmouth, everywhere.
Do you miss the work?
Yes, yeah. I've been out most of my time. Most of my time I've been out. Now I'm sitting here.
What do you do during the day to keep yourself going?
Nothing. Nothing [laughs]. No, no, I'm doing Internet. I'm reading everything what is possible or impossible, mainly the Internet.
So you're spending a lot of time looking for information about the condition?
Yes, yes, mainly about this condition, yes, my condition.