Course of treatment?

Two posts in a week is unheard of from me lol!

Just wanted to share what direction my treatment is going.
I went to see my neurologist on Friday and he agreed with me that my daily injections of capoxone (stopped now) were the cause of my breathing problems and site reactions. Seems I have most probably become hyper-sensitive to the drug.
So we discussed what direction and course of treament we should be looking into.

We are looking into a drug called

Tysabri (natalizumab)

Tysabri (also known as natalizumab) is a drug used to treat highly active forms of relapsing-remitting MS. It is proven to be effective at reducing relapses by approximately 65 per cent in people with the condition .

I will have a MRI scan in the next few weeks to see if I need it.

Here is a little bit of imformation about it.

Who is it for?
People with relapsing remitting MS. It is available on the NHS for people who have had two
or more disabling relapses in a year and have signs of new MS inflammation on a recent MRI
scan.
How is it administered?
Intravenously by infusion into the vein once a month
How does it work?
Natalizumab is an antibody that works by attaching itself to cells of the immune system and
preventing them from getting into the brain and spinal cord, where they normally cause
damage in MS.

The most common side-effects experienced after taking natalizumab are, joint pain, fever,
tiredness, a runny or blocked nose, sore throat, feeling nauseous, headache and dizziness.
In addition, skin reactions to the infusion are experienced.
One serious and often fatal side effect is a condition called progressive multifocal
leukoencephalopathy (PML). This is caused by a viral infection in the brain. The risk of
developing this is about one in 1000 for people who have received natalizumab for more than
12 months. The risk of PML with natalizumab use increases after 2 years of therapy. Patients
with MS should be informed about the risks of natalizumab, including PML, both before
treatment and again after 2 years. People taking natalizumab are monitored regularly to
identify PML and other potentially serious side effects as early as possible.

As of 10th March 2010 there have been 41 reported cases of PML of which 9 resulted in
death. However, the risks of developing PML remain at 1 in 1000.

I would value prayers at this time . As it would be a huge decision.

The sun is shining.

Just wanted to share how blessed I feel.

We at home are having a roller coaster ride of health issues but I am so at peace about it all. It is impossible to put into words how I feel. I have no worries or stress about any of it.
God has been so good to me and Us as a family.
We all at times can be so unthankful for Gods mercies towards us. We too quickly forget God is in control of all things. .
I am sitting here this morning reflecting on the past week and it has been so blessed and Gods love is so evident throughout.
I thankyou for the prayers and most importantly I thank God for loving a sinner such as I.

Quick update on my husband.

Jonathan went private in the end as its was a 2 month wait for a scan.( Thankyou parent in law xx who payed for it.)
He has been diagnosed with sleep apneoa and will have a scan in the future (on NHS) to double check on things.The scan is not urgent hence going back to NHS.
Futher tests will be done and I will keep you updated.

This and that.

I haven't felt inspired much to write anything here for a while. Lots has been going on but didnt really know where to start. So here is a brief summary:

Me - I haven't been to well but I have been plodding along steadily until I kept experiencing breathing problems. The best way to describe it is its like having a panic attack and I could not control my breathing. I went back and forth from my GP and had all sorts of scans and tests and all seemed ok, but the breathing problem just got worse.

I then went to a breathing clinic and was informed I have hyperventilating syndrome and I am expelling far too much CO2 when has a knock-on effect like alkaline blood, kidneys working overtime etc.

I now have diaphragm breathing techniques to master.

Also, one of my medications which I inject daily can make breathing difficult side-effect and my injection zones were becoming too painful, so I am no longer taking that. Which I am quite pleased about!

I will see my neurologist in April and discuss alternatives then. The Lord continues to keep and sustain me - what a wonderful God I have!

My dear husband has not been well at all recently and it all turned for the worse last Thursday. I was close to calling an ambulance out. We went to doctors as an emergency on Friday, he has been told not to drive until further notice and is going to have a MRI on his brain to check for temporal lobe epilespy. But the wating time is months so our family are paying for it to be done privately to help speed the diagnosis along.

We would really value your prayers for us as a family at this time.

Throughout all of this we remember God is in control of all these things and we must trust him more and more as He will never leave nor forsake us.

A hymn that I would love to share.

Well its 2010 and oh how last year just shot by.

I would like to share a hymn that I love dearly . Please go here for the words.

The words are wonderful.

December Daily: A Christmas Survey

December Daily: A Christmas Survey

I saw this at BYGRACE blog and thought id give it a go

About the TREE....

1.When do you put up the Christmas tree? 1 st Day in December thats not a Sunday.
2. Real or fake? We have a fake one
3. Lights? What color?Lights are clear/white.
4. Garland? Silver
5. Theme or no theme?Silver and white
6. What kind of topper? Glass Snowman
7. What's your favorite ornament? Glass Snowman
8. What does your tree skirt look like? Silver tinsel
9. Where do you put your tree? In a corner of our living room. by the sofa.
10. Who decorates the tree? I sort out decorations Hubby tends to decorate it.
11.What's "under" the tree?The dog sometimes lol
12. Do you put candy canes on your tree? no, but chocolate bells

About the FOODS....

1. What's your favorite Christmas cookie? A chocolate one
2. Do you bake cookies and give them away? I buy the best bargains around.
3. Any "special" foods or candy that you only have at Christmas time? Beetroot pickle yummy!
4. What do you eat Christmas EVE? Not much too busy preparing for Christmas day.
5. What do you eat on Christmas day? Cooked Breakfast then a late roast lunch usually Beef and all the trimmings, we invite anyone we know who maybe alone for the day for lunch.
6. Do you like Eggnog?? Yuk!
7. Do you like candy canes? No but they look pretty.

Decorations....

1. Where do you hang your stockings? They are pillowcases on end of bed
2. Do you put lights on your house? We have a Christmas tree white light in kitchen window.
3. Got any outside lawn decorations? No
4. Do you put up a nativity (creche)? No
5. Do you hang mistletoe over the door? No
6. Got a wreath on your front door? No
7. How long does it take you to decorate? 2 hours lol

Are you ready for Christmas - yes I think so just fresh food to buy.

Dolly the dog

This is her regal look.



I am very biased but I have the cutess dog in the whole wide world. She is 3/4 terrier 1/4 collie.

I am going to share a few pictures of her mostly up to mischief.

this look is come and tickle my tummy mummy,I'M waiting.



When we fill the pool in the summer she fights with the hose pipe.She does love the water.


She was orginally brought to be a companion to me when J was at work.Now she is everyones buddy. She is such a loyal and fun dog, she is just perfect for us, she knows when I am ill, she doesn't leave my side.
What a wonderful creation for us to enjoy and look after.