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He had problems getting referred to neurology and had long waits between appointments. In the end he saw a neurologist privately and had a private MRI scan in Poland.
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Yeah, so I seen the neurologist about six months after I see - more, more than that, more than that, it was eight months after I noticed something wrong. He sent me for the test, EM, EMR test and EMG, which was again four months to wait. After that they sent me the letter from the hospital. So I will see the neurologist - I think it was about again five months. I tried to call him. Nobody answered the phone. I left messages on the answerphone. Nobody called me back. I called the hospital. They told me, I asked them if I can see private. They say, “Yes, tomorrow.” They contacted me with a private neurologist in the same hospital. I make appointment for next day. They say so they will have my results. They have only half of it, without the scan, brain scan. And they then say, the doctor says according to this thing I should be seen by neurologist straight away. He say only half of it, the EMG test. And he make appointment - he haven't charged me any money because he say he cannot charge me because he got only half of my things - and he make appointment with my doctor, the doctor who was supposed to see me within the four or five months, for next morning. And he says, “So probably this is motor neurone disease.” But he sent me for another MRI of the spine. I wait another four months. After that he say so he will send me to his colleague. I wait another three months because they sent the letter to the wrong address [laughs]. And they say, “So probably it's motor neurone disease.” But what type, nobody knows. They don't say, at least they don't say nothing.
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.”
So that's…
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. |
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His mother shouted at him when he told her he might have MND.
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What about other family members?
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. |
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He takes several supplements and herbal remedies, but also low-dose naltrexone, normally used to treat addiction. His neurologist will not prescribe it because it is unproven.
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So tell me all the different things that you're taking or trying.
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 4½, 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. |
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He has thought about lots of possible causes. He has spent time near laundry chemicals, but not as much time as the laundry workers themselves.
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Do you have any thoughts for yourself about what might have caused it?
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. |
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His business installing industrial laundry machinery is physically too hard for him now. He is frustrated to be stuck at home.
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How it's affecting my working life? A lot. I've been positioning, installing the laundry machinery. It's not a launderette. The weight of the good washing machine is for example 6 tons. We move them, we install them, we do the pipework, the cabling. You know, water connection to each washing machine can be 4 inch pipes. You know, sometimes it was a hard job. So I cannot do this work myself.
Because it was quite physical?
Physical, yes, some of it was physical.
And is that your own business that you've built up?
Yes, yes.
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. |
