MS Case Study -LDN (Low Dose Naltrexone) and My MS Journey - The first time I became
really aware of my illness was during August 2005. I had just bought a house and
was doing it up entirely from top to bottom, which was extremely hard work. I was
also working full time and so the house took up my evenings and weekends.
My health professional thought I was just extremely run down and may have caught
some kind of virus. I had flu like symptoms, felt drained of energy but also struggled
with my depth perception, missing door handles that I reached for and mis-stepping
/ tripping on the stairs. I went to my bed for a week and recovered in time for
a planned trip to New York for a long weekend, however towards the end of it I started
to feel completely drained once more. I felt cold even with the coats of all of
my family members on, then my speech started to go; forming words was so much hard
work.
When I returned from New York I was in bed for a month with this strange 'virus'.
I recovered by the end of September and returned to work full time and once more
continued to work on my house. I thought nothing of this strange illness until Christmas-time
when I woke up one morning with numb hands and feet. I just thought it was poor
circulation and went for a walk to try and get the blood flowing again. The following
day I was numb and tingling all down one side of my body, from my scalp to my feet.
I went back to the health professionals and the astute GP referred me for an MRI
scan. As I had private medical insurance at the time, I was in within a week or
so. Meanwhile the symptoms I was experiencing had disappeared after a week or so
of rest.
In February 2006 I went to the see the neurologist for the results of my MRI. I
went alone, not expecting them to have found anything at all. I was told that I
had Multiple Sclerosis. This was a shock to me and I didn't really know what it
was. I knew my uncle had it and was in a wheelchair.
The room started spinning and I do not remember a lot of what was said. Once I had
recovered from the shock of what I had been told and seeking information I went and
bought a book on the illness. For me, forewarned is forearmed. I had a few months
of soul searching, crying, panic attacks and general "why me" moments. I then pulled
myself together and decided that this was not going to beat me and that I would not
end up in a wheelchair like my uncle. I read up on the different types of MS and
the consultant had told me that I had relapsing remitting MS, which would come and
go. To me this was good news.
Over the next few years I learned to listen to my body and knew when I had been pushing
it too hard. I had no further 'relapses', but did learn to read the warning signs,
such as shaky legs, and fatigue (which is a different feeling to being tired).
I started to notice a few minor symptoms, which alone were not severe but together
increasingly began to become life limiting. I had begun studying for a second degree
with the Open University and was still working full time and so anything that stopped
me living life to the full was not acceptable to me.
The main symptom was an issue with my bowel. Every month the bowel muscles would
go into spasm and stay that way for days. At the point where I was in pain for two
weeks of every month I decided enough was enough and that I had to do something.
I did not want to take the drugs recommended for MS as they entailed injecting yourself,
and also I would have to cease taking them when I decided to have a family and so
I did not want to become dependent on them only to have to stop.
My research led me eventually to LDN (Low Dose Naltrexone). It seemed a lot less
toxic as you can take it whilst pregnant and breastfeeding. It was also less bothersome
than injections. After some consultation with LDN Research Trust, I decided to give
it a go. I pay for a private prescription because LDN is not licensed for MS on the
NHS. I am lucky enough that the benefit I obtain from LDN has enabled me to be able
to continue to work full time and so can just about afford this.
It took a few months to get the dose right and to see the effects. However once
I was settled on it I began to see the difference. I felt a lot better in myself
and had more energy. I also no longer get 'jelly legs' when I have been overdoing
it. I used to get tonsillitis all the time, but had not had it since getting my
diagnosis of MS. My signal that I was run down before MS was the glands in my throat
coming up. On LDN I started to get that again, as strange as it sounds, I welcomed
the old warning sign as a signal of being normal again! My bowel spasms have reduced
to a day or two a month, which I can control with a painkiller. This is no longer
life limiting for me.
I go surfing every year with a friend to the south coast. I say surfing, I mean
'trying'. I have not yet managed it! However the summer before LDN, when I got back
from my week away I had to go to bed for a few days to recover as I had been so active
all week. The summer after I began taking the LDN I was absolutely fine and went
straight back to work once I got back. I still know not to over do things but find
that that point is a lot further along the scale than it was before LDN. My tolerance
levels are so much higher and I feel normal again now. I really have to push myself
hard to trigger anything MS related....
LDN and MS - I would say give it a few months to get into your system and get the
dose right before you decide whether it is for you or not. I expected an immediate
change when I started taking it and it just isn't like that. You have to get the
dose right for you, it is a very personal thing.
