Wednesday, 22 January 2014
Fall
Last night I fell over, the ataxia is much worse when I am tired. I think that I need to ensure I get an hours kip in during the day to balance (excuse the pun) out my energy. This fall was not bad though it strained my hernia repair which is a concern. I also think I should walk more as this should train my coordination better. The Feriprox has many side affects of which tiredness is one also the SS makes me tired. What does one do?
Monday, 20 January 2014
Thursday, 16 January 2014
Hernia and SS
16/1/14
The Feripox has (in my belief) improved the bouncing vision at times enabling me to have half days where my balance and my attention have shown temporary improvements, interestingly i am finding that the tremors can be stopped with my attention. It was recently discovered I had a hernia and so I had an operation to correct this, the operation has caused discomfort as well as a set back in the progress of the Feriprox. I am in pain and very tired. I believe the codydramol and ibuprofen are contributing to the tiredness which the Feriprox itself is giving. My tinnitus seems to have gotten worse since the operation on the hernia and due to the stitches, I am forced to walk bent over. I will be shown how to change my dressing tomorrow as when I did this today for the first time, I found a plastic cover over the wound and am unsure as to what to do with it. My greatest concern is infection and so I wish to know the best ways to prevent this by discussing this with the nurse tomorrow.
20/01/14
The nurse redressed it and said that I should leave it in its sterile environment and not change it, she would take it off in 7 days. my BP was great too.
20/01/14
The nurse redressed it and said that I should leave it in its sterile environment and not change it, she would take it off in 7 days. my BP was great too.
Wednesday, 8 January 2014
A complication
An
inguinal hernia. I'm under the knife next Wednesday, my concern is
it's pt 1, it's a double so 3 weeks later we play the game again. The
drug Feriprox for the Siderosis kills
white blood cells which lowers the immune system and I don't want the risk of infection when the Feriprox kicks in. I will of taken my eighth pill tonight so as it's early days for the Feriprox, I am hoping I can avoid reducing the blood count too much by getting the operation in early.
white blood cells which lowers the immune system and I don't want the risk of infection when the Feriprox kicks in. I will of taken my eighth pill tonight so as it's early days for the Feriprox, I am hoping I can avoid reducing the blood count too much by getting the operation in early.
Jitters
6/1/14
They have been infrequent until now however I now feel they are worth mentioning, when slipping into sleep I often have a spasm, this is an involuntary movement of a foot, finger, arm or even a kick that wakes me just as I am slipping into sleep. They are never violent or a risk to myself or my partner, they just prevent sleep for a while
They have been infrequent until now however I now feel they are worth mentioning, when slipping into sleep I often have a spasm, this is an involuntary movement of a foot, finger, arm or even a kick that wakes me just as I am slipping into sleep. They are never violent or a risk to myself or my partner, they just prevent sleep for a while
Sunday, 5 January 2014
Possible effects
Hearing
up to 95% of all cases.
Balance
88%
of sufferers are affected. In Fearnley’s review they found that of
these cases, 56% involved were both limbs and gait, while 44% were
predominantly gait.
Dementia
It
is rated at 24% in survivors. This problem in one where medication
can be prescribed to help lessen the chance of catching it. Folic
Acid and assorted Vitamin B supplements are the usual medication.
Bladder
& Bowels
Also
rated at 24% possibility
Anosmia
Anosmia,
or the lack of ability to smell, is listed conservatively at 17%.
Sensory
Signs
The
failure of the senses is rated at 13%.
Anisocoria
Anisocoria,
is when one pupil of the eye is larger than the other and is rated at
least 10%
Other
effects
Following
these are many more sideline effects which rate without percentages.
They include bilateral sciatica pain down the backs of both legs from
the sciatica nerve in the lower spine. This is possibly connected in
some way to lower back pain, another complaint. Also tensioned neck
and extra – ocular motor palsies ( eye movements and cross eyeness
). Other complaints have showed up including a TIA or mini stroke in
an otherwise perfectly healthy man and quite a variety of eye
problems from a complete lack of vision in one eye to speedy
deterioration of short, and or, long distance vision.
Headaches are
another definite further problem. These may be temple located or
alternatively may be at the rear and base of the skull in the
proximity of the cerebellum. Coupled with this, many sufferers
develop migraines.
A common side effect of SS is the complete
change of sleeping patterns which may show up as irregular or
interrupted sleep, or may be the opposite – long periods of sound
sleep. Some survivors report being able to always soundly sleep up to
13 or 14 hours every night. Many say they need midday naps but this
generally effects night time sleeping habits in some way and
therefore mid day breaks are best if only a rest is taken, without
sleeping.
The author finds that dusk and nightime are the worst
periods for balance. It is particularly important to make maximum use
of lights to navigate during hours of darkness, especially in narrow
passageways and doorways. Outside, over irregular terrain, without a
light is a definite no-no.
Treatment and advice
The following is taken from http://superficialsiderosis.wordpress.com/what-is-superficial-siderosis/ 5/1/14
Treatment
Surgery has only rarely been described as being used in SS patients because of the usual time delay before diagnosis. If sufficiently early in the diagnosis, then ablating or plugging the cause of bleeding may help restrict further complications. The bleeds may even be attributed to complications in the spine such as tumours or other similar problems.
Some other forms of medication such as iron chelators have been tried but have not definitely proven to be beneficial.
It is considered worthwhile to treat SS survivors against the possibility of getting dementia. Folic Acid in tablet form plus forms of Vitamin B, either in daily tablet form or monthly injected, are those most commonly administered.
To lessen the chance of a return of TIA’s or strokes various forms of medication are prescribed such as blood thinners and the traditional half an Aspirin a day.
For those experiencing permanent headaches sometimes anti-depressants in mild doses are found to provide long term relief, along with common medication such as Panadol.”
Advice
(FB 1st September "13) Alfredo in central America is now symptom free
(FB 7th September "13) Letter from Dr Levy
Questions
5/1/14
I took my 3rd tablet this morning, according to someone on the Facebook group '' it will take up to 3 months before changes kick in so I don't expect anything too soon.
I took my 3rd tablet this morning, according to someone on the Facebook group '' it will take up to 3 months before changes kick in so I don't expect anything too soon.
As the consultants know little of this condition, I will be undertaking a study into finding out all about it. Here questions and points to research will be posted, when they are answered a blog will be made of them and then they will be removed;
The
iron that is messing us up seems to be within the flow of CSF, how
is CSF created and what it consists of?
How
can CSF consistency be altered, the speed of which it travels and the
affects and effects of this?
As
it is the iron deposits causing the problem, could magnetic therapy
could be of assistance?
A
tens machine confuses the Alpha Beta fibers within the vertebrae
stopping pain, I am wondering if a magnetic source over the affected
area could pull the iron into the CSF flushing it from the system?
(http://www.answers.com/topic/cerebrospinal-fluid 5/1/14)
Cerebrospinal fluid
Clear, colourless liquid that surrounds the brain and spinal cord and fills the spaces in them. It helps support the brain, acts as a lubricant, maintains pressure in the skull, and cushions shocks. Analysis of CSF obtained by a spinal tap (lumbar puncture) helps diagnose a number of disorders, including meningitis and hemorrhage in the central nervous system.
Read more: http://www.answers.com/topic/cerebrospinal-fluid#ixzz2pXyyoR9c
CSF – how is this made, ingredients
Saturday, 4 January 2014
Dehydration?
4/1/14
I awoke with a feeling of dehydration and aim to explore why this could be. As I am to take two pills a day (amongst others at once a day), I will purchase a pill box for my bedside. I aim to add here later today foods to avoid and what can be eaten.
I awoke with a feeling of dehydration and aim to explore why this could be. As I am to take two pills a day (amongst others at once a day), I will purchase a pill box for my bedside. I aim to add here later today foods to avoid and what can be eaten.
Friday, 3 January 2014
Waiting
3/1/14
Yesterday I collected 100 Ferriprox
tablets to start the treatment, I have been told by my consultant
that I need to hold back from starting the medication until she
receives my blood tests, she needs to know where my blood iron stands
before the test begins.
14.00
My battle of Superficial Siderosis
My battle of Superficial Siderosis
Recently (2009-12, date not specified) I had a brain haemorrhage. Somehow blood from the haemorrhage managed to get into the cerebral fluid which runs through my vertebrae, iron from the blood is causing problems in both motor and cognitive skills (to put this simply, imagine rows of cables without insulation close together and liquid iron spilt on them, they would short out causing the lights to behave in a manner they should not). In America the use of Ferriprox (Each tablet contains 500 mg deferiprone), is indicated for the treatment of iron overload, this is my blog as to how I clear the iron from my blood including the use of Ferriprox.
At this time, the effects from the Superficial Siderosis are;
Ataxia
Migraines
Memory loss (short and long term)
Tinnitus
75% hearing loss
Muscular tremors
Double vision
Video vision (what I see bounces when walking)
Constant tiredness.
This is my journal to recovery.
This is my journal to recovery.