wilson
03-30-2008, 02:08 PM
Hi everyone, thought I would post my experience here as you all know what I'm going through. I'm a 37-year-old British guy living and working in Hong Kong. About five years ago (when I was living in Singapore) I noticed severe cramps in my feet that I could induce by stretching my feet forward, but didn't really take much notice of this at the time. In May 2004, I noticed involuntary twitching in my thumb and index finger on one occasion. This was a couple of days after a nasty fall playing soccer. I visited my GP who took an x-ray of my upper spine and advised me everything was fine - the twitching didn't reoccur, therefore I forgot about it.
In February 2005 I had a very nasty flu bug which knocked me out for about a week and also caused me to lose my sense of smell/taste (anosmia) for a couple of years (it gradually improved). The other noticeable effect from this bug was weakness in my right hand and legs, which largely disappeared a few weeks later. However, from this point forward I became aware of fasciculations in my right hand at the base of my thumb. With the benefit of hindsight, I now realise I also had them in my legs, but for a long time I thought it was perhaps just the blood pulsating through my veins.
This continued through into 2006 and I then moved from Singapore to Hong Kong with my company midway through the year to set up a new office for them. From this point forward my condition severely deteriorated and whilst it could be coincidental, I'm convinced stress certainly had a part to play. To add some context, I got married in late 2005, my wife became pregnant in May 2006 and as I mentioned above we moved country in mid 2006.
I saw my new GP in Hong Kong in late 2006 who noticed my right hand had wasted and referred me to a neurologist. During my initial appointments with him, I never mentioned anything to do with my legs as they were still relatively strong. The initial diagnosis was a compressed nerve in my right wrist and he arranged for me to see an orthopedic surgeon. I then ignored the condition for about six months as my daughter was born, work was very busy and deep down I was hoping it would just go away. In April 2007 I went for a second opinion as my legs had become very weak and I had foot-drop in my left foot. By this stage I couldn't really write anymore as I had lost practically all the strength in my right thumb and index finger.
Following more NCV/EMG tests I was diagnosed as having either MMN, ALS or PMA and IVIG treatment was arranged (my neurologist was very confident it was MMN). I received the treatment in May 2007 and initially had such severe side effects the treatment had to stop: agonising shooting pains in both legs for about six hours (I had to be hospitalised). The treatment began again two days later with a much-reduced infusion rate. Following the treatment, my strength returned and I felt like my old self again which was the most fantastic feeling. This lasted for about three months until the old symptoms started to creep back in again. I found this hugely depressing as I had convinced myself I was "fixed" and it was a one-off treatment. I had another course of IVIG treatment in September 2007 and about six weeks later the effects wore off. My last treatment was in early January 2008 and this lasted about five weeks - I'm going in for another four-day session tomorrow.
What is clear is the diminishing duration of the IVIG's effectiveness. At four to six weeks, it seems I am now at a level similar to many other posters here. The problem is I was in denial about this condition until very recently. It doesn't seem that long ago when I was going to the gym four times a week, could walk for hours and had lots and lots of energy. After all, I still think I'm relatively young. The fatigue I experience now is getting worse and the loss of strength in both my legs and feet makes walking more than 100 metres very tough and tiring. Thankfully my left arm/hand isn't affected.
The other issue I have is work and my ambitious (plus stubborn) nature. I work in the financial services sector and run the Asia region for my company. This involves lots of travel, entertaining and late nights, which is one of the reasons I don't regularly receive treatment as it means three to four days out of the office. Consequently, the fatigue is massively compounded and I am also regularly asked why I am limping.
I'm now accepting the fact I have to minimise the time between treatments and hopefully lead a semi-normal life. Ultimately, there are many, many worse conditions to have (my father is currently dying from advanced lung cancer), but for me it has been an issue of denial and acceptance. Following IVIG treatment, I now tend to think of myself as Popeye after his spinach and realise that keeping your sense of humour towards life is very important in dealing with this. I find it frustrating that I cannot run with my daughter or hold her hand properly, but at least I'm here with her and can hopefully give her some brothers and sisters! I'm also very, very fortunate to have a beautiful, loving and caring wife who has helped me through this period and gives me the confidence to accept my condition. I think posting this message is also part of the process and I'm very glad to have found this forum. Thank you for reading this if you got this far!
In February 2005 I had a very nasty flu bug which knocked me out for about a week and also caused me to lose my sense of smell/taste (anosmia) for a couple of years (it gradually improved). The other noticeable effect from this bug was weakness in my right hand and legs, which largely disappeared a few weeks later. However, from this point forward I became aware of fasciculations in my right hand at the base of my thumb. With the benefit of hindsight, I now realise I also had them in my legs, but for a long time I thought it was perhaps just the blood pulsating through my veins.
This continued through into 2006 and I then moved from Singapore to Hong Kong with my company midway through the year to set up a new office for them. From this point forward my condition severely deteriorated and whilst it could be coincidental, I'm convinced stress certainly had a part to play. To add some context, I got married in late 2005, my wife became pregnant in May 2006 and as I mentioned above we moved country in mid 2006.
I saw my new GP in Hong Kong in late 2006 who noticed my right hand had wasted and referred me to a neurologist. During my initial appointments with him, I never mentioned anything to do with my legs as they were still relatively strong. The initial diagnosis was a compressed nerve in my right wrist and he arranged for me to see an orthopedic surgeon. I then ignored the condition for about six months as my daughter was born, work was very busy and deep down I was hoping it would just go away. In April 2007 I went for a second opinion as my legs had become very weak and I had foot-drop in my left foot. By this stage I couldn't really write anymore as I had lost practically all the strength in my right thumb and index finger.
Following more NCV/EMG tests I was diagnosed as having either MMN, ALS or PMA and IVIG treatment was arranged (my neurologist was very confident it was MMN). I received the treatment in May 2007 and initially had such severe side effects the treatment had to stop: agonising shooting pains in both legs for about six hours (I had to be hospitalised). The treatment began again two days later with a much-reduced infusion rate. Following the treatment, my strength returned and I felt like my old self again which was the most fantastic feeling. This lasted for about three months until the old symptoms started to creep back in again. I found this hugely depressing as I had convinced myself I was "fixed" and it was a one-off treatment. I had another course of IVIG treatment in September 2007 and about six weeks later the effects wore off. My last treatment was in early January 2008 and this lasted about five weeks - I'm going in for another four-day session tomorrow.
What is clear is the diminishing duration of the IVIG's effectiveness. At four to six weeks, it seems I am now at a level similar to many other posters here. The problem is I was in denial about this condition until very recently. It doesn't seem that long ago when I was going to the gym four times a week, could walk for hours and had lots and lots of energy. After all, I still think I'm relatively young. The fatigue I experience now is getting worse and the loss of strength in both my legs and feet makes walking more than 100 metres very tough and tiring. Thankfully my left arm/hand isn't affected.
The other issue I have is work and my ambitious (plus stubborn) nature. I work in the financial services sector and run the Asia region for my company. This involves lots of travel, entertaining and late nights, which is one of the reasons I don't regularly receive treatment as it means three to four days out of the office. Consequently, the fatigue is massively compounded and I am also regularly asked why I am limping.
I'm now accepting the fact I have to minimise the time between treatments and hopefully lead a semi-normal life. Ultimately, there are many, many worse conditions to have (my father is currently dying from advanced lung cancer), but for me it has been an issue of denial and acceptance. Following IVIG treatment, I now tend to think of myself as Popeye after his spinach and realise that keeping your sense of humour towards life is very important in dealing with this. I find it frustrating that I cannot run with my daughter or hold her hand properly, but at least I'm here with her and can hopefully give her some brothers and sisters! I'm also very, very fortunate to have a beautiful, loving and caring wife who has helped me through this period and gives me the confidence to accept my condition. I think posting this message is also part of the process and I'm very glad to have found this forum. Thank you for reading this if you got this far!