SlimmingWhirled and stuff

A Christian mother's notes on her battle with weight, MS, and life in general. With a generous helping of optimism and craft-work!

Wednesday, February 13, 2008

Encouragement

I have had quite a busy week so far for me. I have had people coming and going everyday so far friday will be a day of quiet I hope before half term starts.
I have started with a a dear like minded friend prayer time (prayer buddy), we pray together and we have found it to be of great benefit .
We are going to do it regulary and I hope this will be of great encouragment to one another. I have felt mentally and spiritually well since and pray that this will continue for me.
This is the first time for awhile I have felt strength mentally and physically and actually venture outside for a walk with the dog (I have not felt well enough to do this).
Praise the Lord for He is so loving and good.
I have also made descision on medication and going to go along the copoxone route. This will hopefully start in the coming month.
It will take about seven months to start working so prayer is highly valued for me to stay well.

Friday, February 08, 2008

Change of treatment -

Pray for me please for me to make the right decision on medication.

I need prayer to help me make a decision on my treatment as I have just seen the neurologist, and he suggested it might be beneficial to change from avonex (once a week betaferon) to copoxone which isn't a disease-modifying drug - you inject daily with a much smaller needle.

My neurologist feels avonex is no longer of any benefit to me as I seem to be getting progressively worse.

What is copoxone?

This medication is used to treat a type of multiple sclerosis that occurs when symptoms appear in cycles of worsening and improvement (relapsing/remitting multiple sclerosis-MS). It is a protein that is thought to work by preventing your immune system from attacking the nerves in your brain and spinal cord. This effect can decrease the number of periods of disease worsening (relapses) and prevent or delay disability. This drug is known as an immunomodulator. It is not a cure for MS.

Glatiramer acetate(copoxone) significantly reduces the frequency of relaspes in those with relapsing-remitting MS. It also slows the number of new lesions (tissue damage) as seen on MRI and decreases disability.
Glatiramer acetate can slow the rate of new lesions in those with relapsing-remitting MS, without the flu-like symptoms that interferon beta (avonex) medications can cause. However, it may not be as effective at reducing disability as interferon beta.( oh dear)


How It Works

Glatiramer acetate (formerly known as copolymer-1) is an artificial protein that resembles a natural myelin protein. It is not known exactly how the medication works, but it may help people who have MS by preventing the body's immune system from attacking the myelin coating that protects nerve fibers.,

What To Think About

Glatiramer acetate may be used if you have tried interferon beta and the medication has not been effective or you cannot tolerate the side effects. Generally, glatiramer acetate is well-tolerated and does not cause the flu-like side effects that occur when taking interferon beta medications. However, it may take up to 7 months for any benefit from glatiramer acetate to occur. Benefit from interferon beta occurs within 1 month of starting treatment.
Treatment with glatiramer acetate should not be started until it is clear that you have the relapsing-remitting form of MS. The National Multiple Sclerosis Society recommends that treatment with glatiramer acetate or one of the interferon medications be started as soon as a clear diagnosis is made.

In addition to side effects, there are some drawbacks to treatment with glatiramer acetate:

Treatment is not effective at all for some people, and it is hard to predict whether the medication will help a particular person.
The long-term risks of treatment are unknown. It is possible that long-term use of the medication may lower the body's defense against other diseases. For people with mild MS, the benefits may not be worth the possible risks.


Wow - a lot to take in.....

Positive points
smaller needle- much smaller!
Site reactions rare ( i react badly to avonex)
Less side effects- avonex makes limbs painful and gives flu like symptoms
Avonex seems to be no longer benefiting me.

Negative points.
Doesn't reduce disabilty from relapses
Takes 7 months to start working (avonex takes a month)
Daily injecting rather than once a week
Long term side effects not really known - could effect immune system and make you prone to attacks.

I have also been prescribed a drug to help with pain, I am going to rattle!!!

Please pray for me.

What is MS ?



A brief desciption OF MS.


Multiple Sclerosis is a long term disease that affects the central nervous system (CNS). The CNS consists of the brain, spinal cord, and the optic nerves.Surrounding and protecting the nerve fibres of the CNS is a fatty tissue called myelin, which helps nerve fibres conduct electrical impulses around the body. In MS, myelin is lost in multiple areas, leaving scar tissue called sclerosis. These damaged areas are also known as plaques or lesions. Sometimes the nerve fibre itself is damaged or broken.Myelin not only protects nerve fibres, it also makes their job possible, so when either myelin or the nerve fibre is destroyed or damaged, the ability of the nerves to conduct electrical impulses to and from the brain is disrupted, and this produces the various symptoms of MS.
MS can have many different effects on patients and their families. The increasing level of disability and symptoms experienced by many patients can affect working, family and social life.

MS was first recognised over 130 years ago. In spite of this, we still do not fully understand the cause of MS. There has been a great deal of research on what actually triggers MS and a number of theories have been proposed over the years.
The theory that is widely held now is that MS is an autoimmune disease. That's where the body's immune system, which should in theory only attack invading germs, turns on the body's own tissues.
Other autoimmune conditions include rheumatoid arthritis, where the lining of joints become inflamed, and Crohn's Disease which affects the wall of the intestines.
In the case of MS, the immune system attacks the nerve coverings in the central nervous system, known as myelin. The reason for this reaction is unknown but it is thought that the genetic make up of some people means that MS can be triggered by an infectious agent or agents
The physical damage caused by MS only happens in the brain or spinal cord. However, as these organs control the functions of the whole body, symptoms can affect many different areas.
How MS affects an individual depends on where damage occurs in the central nervous system and which nerve messages are interrupted or blocked. As well as the variety of symptoms, the severity and duration will also vary considerably from person to person.



The course of MS is often classified into four internationally recognised types, although people's experience of the condition varies so widely that it is not always easily apparent which type of MS they have.

1: Relapsing Remitting (RRMS) At diagnosis, the majority of people have this form of MS - relapses (also known as attacks or exacerbations) occur on average once or twice a year, with good or complete remission in between, but with a tendency for symptoms to persist or increase over time.
This is the most common form of MS at time of initial diagnosis. It affects approximately 85% of everyone diagnosed with MS.

2: Secondary Progressive (SPMS)People with this type of MS experience an initial period of relapsing remitting disease, (see above) but this is followed by a steadily worsening disease course with or without occasional flare-ups, minor recoveries (remissions), or plateaus.About 50% of people with relapsing remitting MS develop secondary progressive MS within 10 years of their initial diagnosis.

3: Primary Progressive (PPMS)People with this type of MS experience a slow but steady worsening of their disease ('progression') from the start, with no distinct relapses or remissions. But there are variations in speed at which it progresses. There are also occasional plateaus and temporary minor improvements.This type of MS is relatively rare - only about 15% of people with MS will get this form.

4: Progressive Relapsing (PRMS) In this rare form of the disease, people experience progression from the start, but also experience relapses as well. The progression is the main factor however, and PRMS is considered to be largely similar to PPMS.

Benign MS In some cases, people experience very occasional relapses, usually early on, with complete recovery - or remission - in between. They don't have any serious disability and further relapses are infrequent - in fact they can sometimes happen a number of years apart. By its nature, benign MS can only be diagnosed after a long period of time with little disease activity. About 25% of people turn out after a number of years to have this type of MS.


About Multiple Sclerosis

How does MS change over time?


MS is one of the most difficult conditions to forecast. The sense of uncertainty - simply not knowing how things will be in the future - is often a serious additional problem for people with MS and their families. MS varies a great deal from individual to individual but, in time, people will often get to know their own MS. Even then, it can still surprise them.
Factors that suggest a lower level of disease activity include:
females
people diagnosed between the ages of 20 and 40
a low rate of relapses
complete recovery from first relapse
extended intervals between first and second relapse
Optic Neuritis as an early symptom
symptoms which are predominantly sensory - things like numbness, tingling
low disabialisty 5 years from the onset of the condition
a small number of MS lesions on an MRI Scan
As many as a third of people with MS have no or only minor problems after 10 years. But it is impossible to say with any certainty how each person's MS will develop.

THIS INFORMATION CAME FROM http://www.msdecisions.org.uk/

Tuesday, February 05, 2008

cards..










The cards that are book shaped are my first attempts at bookatrix ( embossed book lookalike cards , some are 3d others are flat. I really had fun making these but they are too fragile for posting but fine by hand. I make little boxes to give them in and thats fun also.