First fall outside

My left foot turned inside when I fell in a gap of a walkway. My vision was a very bouncy today so I am wondering why this is. Putting everything down to my visual disability is too easy. I have concluded that my physical health and mental health must work together and I have been allowing  the mental get the best of me, I need to get physical. I am investing in a weights bench again taking it slow.

Hematoma

Every week I have a full blood count check. Today I went to the hospital to have my blood taken, and everything went as usual however, just a few moments ago I removed my plaster to see this haematoma from the injection which has not occurred before now. Is this a concern?

5/5/14

It appears that I am bruising easily because of the large needles. I had a smaller one and they are fine.

Oops, only half the dose!

I have been taking only half the dose of Feriprox from day one till now accidentally, however this seems to have worked out well as there would of been a period of time without any of the drug. The positives so far are;

Less shakes
Less bouncing in vision
Very few smooth muscle spasms

The negatives

Stiff joints
Tiredness

This shows that with only half the dose I am making massive improvements. I will now take Feriprox  two times a day with two tablets. I am confident that the results will be excellent in very little time. Today even the headache was minimal and not localised like last time.

I need to ask for something for my stiff joints.

Regular headache location

A regular pain behind the lower Occipital bone has been occurring throughout the day and as I recall has occurred on other days. The pain sets off as sharp and then almost immediately turns cloudy and heavy. Today I was up and about quite a bit and was not under any major amount of stress. My shakes have been 2/5 however my coordination has been very bad. 

Faster reflexes

Today has been a big development in the taking Feriprox (5 weeks so far). For the first time in 33 years (I had a brain hemorrhage in "82), my arm and hand on my right side caught a bottle as it fell off the tabletop.

I'm well chuffed. My shakes have got less and I am more coordinated. I am very optimistic with the future.

Faster reflexes

Three days ago there was a big development in the taking Feriprox (5 weeks so far). For the first time in 33 years (I had a brain hemorrhage in "82), my arm and hand on my right side caught a bottle as it fell off the tabletop.

I'm well chuffed. My shakes have got less and I am more coordinated. I am very optimistic with the future.

Aching joints

At first I put it down to exercise as in being out and busy however recently I have felt it in my hands and neck. Should I take some medication of the counter shelf  to help with aching joints?

When I stopped weight training (which was about the time of my first hernia operation), I had a bad shoulder. The shoulder pain seemed to be a minor deltoid tear however, I believe I believe I could have a nerve trapped upon rotation of the shoulder. I have arranged a scan with my doctor and am taking 1600 ml of ibuprofens per day to reduce the swelling, hopefully this will also help out with calming on my nerves.

Headaches

They seem to be everyday to some degree however today seams to be the worst to date. It appears that The worse my headache, the worse my coordination is as well as shakes. The headaches seem to be different, today's started as an all over dull cloud, then dull behind the eyes and in the temples then forehead and behind the eyes all still heavy and cloudy. Other days have included brief sharp pains. A contributing factor to this, seems to be tiredness.

The Facebook page superficial Siderosis has many comments with regards to tiredness and headaches for those with SS so this would seem to be expected. The problem with sleeping during the day is in the evening when is trying to sleep I do not   wish to  therefore I wake up late and tired so I intend to try to stay awake as much in the day though this will make me more tired during the day. I have antidepressant pills however I feel a pill to relax to relax me more would use  less energy making me less tired. Could this work?

Reflexes and coordination

Thursday there was a big development in the taking Feriprox (5 weeks so far). For the first time in 33 years (I had a brain hemorrhage in "82), my arm and hand on my right side caught a bottle as it fell off the tabletop.

I'm well chuffed. My shakes have got less and I am more coordinated. I am very optimistic with the future.

Limited treatment

Recently I was informed by the NHS that the drug Ferriprox and its treatment are to be limited to 90 days, thereafter they will no longer supply either. Their reasons were that the application had no weight to it though we are also informed that people in other areas are getting this funding. I am getting together a letter to our local MP to see what he thinks as well as to ask whether my medical status is because of a postcode lottery.

Health wise, I am finding I have the shakes more with my entire body and I am much more tired. My second (and last) hernia opperation is set for the 20/2 as long as my blood count is ok.


Late February I was granted a years supply of Feriprox and care.

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?

Food and drink

Food and drink to avoid

Avoid vitamin c 2 hours before or after FP
Avoid egg yolks

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.

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.

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

Possible effects

http://superficialsiderosis.wordpress.com/what-is-superficial-siderosis/

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

interactions

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. 

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?

The route of the CSF in the brain and and the vertebrae

(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

To research http://www.hydroassoc.org/ha-updates/brain-101-the-ventricles-and-csf-flow/

CSF – how is this made, ingredients

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.

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


I now have been given the ok to start. 1st pill down.

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.