MS Case Study -I had my first aimspro shot on Tues pm-50 hours later and, so far,
nothing to report. Apparently any changes can happen at any stage from immediate
to weeks. Somehow I expected to feel something, even if just a bit different, but
then I’m not the most patient of those when it comes to my MS.
01/06/10
Had second injection on Monday-given to me by my son’s partner who is a nurse. She
will show my youngest son how to do it as there is no way that I could self-inject.
They say it is easy but someone I am in contact with who has also just started lost
half of one injection on the floor as he had an airlock.
It is so easy in this situation to search for improvements and basically I am not
sure at the moment. The only difference is spasms I was feeling on the right hand
side of my insides and a burning sensation that I have had on the right side of my
trunk have virtually gone, but as these left me for periods before it mat well be
not the medication. If this happens with my leg spasms it would be a result. I am
assured that improvement times vary considerably from person to person. I am still
cautiously optimistic.
12/06/10
Had my 4th injection on Sat. Results so far-my stomach spasms and burning sensation
on my right side remain greatly improved and my right arm which had quite restricted
movement has a lot more flexibility It is difficult to evaluate. One reason for this
is that, of my own bat, I stopped taking steroids (which I had been taking for a
few days on and seven days off for about 18 months).
About one week into the treatment I was really suffering with my leg spasms and I
checked via Proventus as to whether I had done anything wrong. I got a message back
from them to say that it would have been OK to use steroids alongside the treatment
until such time that I could withdraw from them slowly. So back on the steroids again
and my leg spasms are way better but is this the steroids or am I imagining that
my legs feel better than they have for some time? The answer is I just don’t know
and only time will tell.
I am certainly not one of the ‘amazing’ responders we all hear about. However, I
am in phone contact with a man who has had excellent results on his extremely stiff,
unbending legs-his wife confirms his claim. I envy him-this is the symptom I most
want to respond. It has also had a big impact on his fatigue, but this is not something
I have had a problem with. His fatigue improved in the first week and his stiffness
started to improve after the third injection. He is a few weeks ahead of me.
13/07/10
I have had eight injections currently. It was interesting to have a ten day break
when I was on holiday as it seemed to confirm what I had been assuming was the positive
result that I had been getting. The main result is that my digestive system is about
80% better. I had been bothered by what I assumed was IBS for months and had been
checked by my health professional twice because I felt so uncomfortable in my stomach-this
has virtually gone.
I spoke to someone from Proventus yesterday to ask if this was an unusual result
and he said that it was to be expected if that was a problem with me, the drug is
expected to be used for Crohn’s disease in time. I told him that although this was
a very good result for me I could not help feeling a bit disappointed that other
things like spasticity and stiffness were about the same and, so far, no improvement
in my hands.
He said that it was early days, which is what I feel. (Apparently it is about 30%
of those who get a very quick or immediate response to the jabs.) There are a few
things arms and legs wise that I think may be better, but I do not want to report
anything until I can more or less be sure that it is a result from the treatment.
So, on the whole, I am still feeling positive. I have had a result and I hope that
there is more to come. I will update as and when.
19/08/010
I only have one shot left to go. I am going to order fifteen more as I feel that
I have to give it six months to judge fairly. Positives are still there – very much
improved digestive system, burning feelings to trunk (inside and out) almost gone
and less stiffness and spasms. My neuro-physiotherapist has been able to do work
on my legs that she had to give up last year because she could not bend them at all
– she says they are definitely better. (Baclofen and Tizanidine had been tried before
to no avail). I no longer waken with my hands clenched into fists, but there is no
improvement in the flexibility of my fingers.
Almost every evening my right eye became sore, sometimes to the point that I would
cover it occasionally with my hand, this has virtually stopped, but it was a very
minor problem. I do not think that, as yet, there has been a significant improvement
in my posture but I hope this may come.
If this was an NHS drug I would be feeling more positive than I am as I would be
hoping that more improvements may come.
As I know that I will have to stop at Christmas I feel quite down about it. I cannot
bear the thought of all these things coming back as I do not think that I will have
been on it long enough for it to have had a cumulative effect. I did not expect miracles
from this treatment but I had hoped for a bit more improved mobility - getting in
and out of the car more easily which has only improved slightly etc. However, I have
to realise that I had got worse over the last 18 months and nothing was improving
until I started Aimspro.
If I look at it that way, I have to remember that any improvements are worth having.
10/09/10
Just a quick update. Have had 18 jabs now. Everything much as before. Good things
are staying with me but nothing new as far as I can see, except I have just begun
to realise how much less often I go to the loo. As this has not been a major problem
for me, I had not put it on my ' wish list'.
However, it is a good thing to have happened. When I go shopping, I now rarely have
to search for a loo – I just wait until I get home. I also get up less often in the
night.
Still hoping that my mobility plus my posture, would improve a bit. However, its
very important to me that my physiotherapist can now do work on me that she had not
been able to do for some time prior to the treatment.
