Multiple Sclerosis / Ciguatera (fish poisoning)
Living in Peru, Australia and the Caribbean
I originally come from Peru, but in 1969 my family migrated to Australia. After nearly eight years of living there they migrated again, but to Santo Domingo, Dominican Rep. in the Caribbean. At the beginning I was not sure whether I wanted to move there, so I went to have a look first. After a few weeks I liked the place so much that I even applied for a job when I saw an advertisement in the paper and I was eventually offered the position. I started working and a while later I commented that I had lost the feeling in my feet and a colleague asked me whether I had eaten any fish lately. When I mentioned I had, he said that it must be ciguatera and that I should visit a neurologist. The doctor checked me out and confirmed my colleague’s diagnosis. The doctor used a kind of needle to prick me on my feet and lower part of my legs, but I could not feel anything in what could be called the sock area. I had to have a few intramuscular vitamin B injections and the problem disappeared after a couple of weeks.
The problem occurred again several times over the next few years and every time it seemed to manifest itself in a different way. Most of the time it happened on my feet and legs, but another time it was my chest that was affected. I could not even hold my small nephew in my arms anymore, as I felt as if I had gigantic breasts, which were on the way! At another time feelings were reversed and metal, which should have been cold to the touch, felt as if it had been a hot iron! Then I started seeing double, so I could not drive my car anymore! I went to the neurologist again and this time I even had to stay in hospital. I was also told that it was better if I stopped eating fish, as it might kill me next time! So even though I like seafood very much, I decided to stop eating fish altogether. Time went past and although I was no longer eating fish, I still kept getting ciguatera type symptoms anyway! The neurologist was puzzled, but he did not have an explanation for my problem.
Moving from Australia to Austria
Then in 1989 I left Santo Domingo and moved back to live in Australia, but I never had any neurological problems while living there. Then in 1993 I moved to live in Austria, but it was not until 1999 that my feet got numb once again and it felt as if my shoes were full of sand! But instead of giving me vitamin B injections like Dominican doctors had done, Austrians doctors wanted to do a lumbar puncture and a magnet resonance (MR) test! I knew all about lumbar punctures, as my father had a few of them and I was scared, so I refused and asked them to give me vitamin B instead. The vitamins did not help at all and, as the problem persisted, I went to get a second opinion from a neurologist somebody recommended. That doctor checked me out and concluded that there was nothing wrong with me! After two more weeks with no change, I called my neurologist in Santo Domingo and he told me to have the puncture, as that was the normal thing to do.
So I was in the hospital for a whole week and they did many tests. Scared as I was of the lumbar puncture, when the time came, I did not feel a thing and with the needle still inside my spine, I got the giggles! I asked the doctors about the colour of the liquid they had taking out and was disappointed to find out that it was not red, as I had expected, but clear, just like water!
Not fish poisoning but Multiple Sclerosis?
Doctors in the hospital just laughed at my ciguatera or fish poisoning explanation and did not pay much attention to that at all. They came out with their diagnosis, but even though I had heard about Multiple Sclerosis (MS) before, I did not really know much about it. My mother sent me some brochures in English from Canada, as I had not been able to understand what the doctors had given me, as it was all in German. They gave me Cortisone and the problem soon disappeared, but I refused to start MS medication immediately, as I had been free of problems for 10 years, so I did not see the need to start so soon, as I rather wait to see how things developed.
Three years went past and I had no further problems, but in the year 2002 I noticed that I was tripping a lot while walking on the street, so I returned to the neurologist in the hospital and finally agreed to start MS therapy, by injecting myself Rebif 22, which a few months later was increased to the higher dosis Rebif 44 and I have been on that ever since.
A while ago I saw a program on television about a German woman who had gone on holidays to the Caribbean and happened to eat ciguatera infected fish, so she developed the same symptoms I used to have when living in Santo Domingo: numb feet. She recovered from the ciguatera, but commented that her symptoms kept recurring! Just like it had happened to me! Before starting to write this hub I did some research on the Internet and found many articles about ciguatera, and they mention that many times doctors confuse it with Multiple Sclerosis! When I was diagnosed back in the year 2002, doctors reckoned that they had 100% certainty that it was MS, but I was not so sure!
To start with, I don’t come from a cold country, like Canada, northern USA or Sweden, where most MS patients live, but from Lima, Peru, which happens to be just a few degrees south of the Equator, so I am not the typical MS patient at all. Doctors in Austria are used to finding MS patients, as the incidence in Austria is relatively high, so of course, when they came across me, they just took it for granted that I was another MS case.
On the Internet I also found that doctors are also doing magnet resonance tests of people affected by ciguatera, so I would like to know the difference between the MR scan of somebody with MS, compared to that of one who has ciguatera poisoning. They are also mentioning demyelization, but I wonder whether that is the same as what is affecting my nerves, as a result of the MS! I wish I could understand more about medicine, because the problem sure intrigues me!
So I keep on injecting myself Rebif three times a week, but it is a very strong medicine and goodness only knows what it is doing to my kidneys and other organs. I have to follow my doctor’s orders, as I don’t have anybody else to turn to, but I am full of questions, as I am not so sure about things as doctors seem to be!
Medical update comment
I would now like to add a medical update comment to this hub.
In 2010 we went on holidays to Spain and I was able to watch my daughter eagerly making her first parachute jump in Empuriabrava. She had tried to do it in Cairns before but could not due to weather. She was very daring and watching her jump made me decide to stop injecting myself, as it was taking me 30 mins. every time! I did not consult or ask anybody, I just did it and felt good about it. Time went on and a year later she decided to go and study in Melbourne alone. In 2013 she finished her Graphic Communication degree with a price and then went on to do an Honours Degree, so we feel very proud of her.
In the meantime the whole family followed her and now we are all happy in Australia together!
I was referred to a Neurologist in Newcastle (city closer to Nelson Bay, where we live) and she recommended I start taking Gilenya a daily pill to replace Rebif, the injected medicine. It is easier and I am closely controlled with regular lab tests.
I have put the Austrian and Australian neurologists in contact, as the Australian one even studied in Germany, so she can read all my German medical reports.