The Great NetXperiment!

JK ROWLING yesterday condemned a decision to deny multiple sclerosis patients in Scotland access to a drug on the grounds of cost.

The Harry Potter author, whose mother suffered MS, broke her silence on the Scottish Medicines Consortium’s refusal to recommend Tysabri ahead of a debate on the drug by MSPs tomorrow.

Rowling said cost should not dictate the use of a drug which could help tackle a serious illness such as MS.In December, the SMC said the economic case for Tysabri - which costs £15,000 a year per patient - had not been demonstrated.The announcement prompted dismay among patients and MS campaigners.

Scotsman.com News - Read More Here

jk rowling MS Stuff multiple sclerosis scotland tysabri

Yesterday, after chasing my neurologist for weeks I got the results from my MRI with contrast scan. The verdict? I have Multiple Sclerosis *laughs so hard I could fall off my chair*

Because the symptoms I was experiencing had mostly gone two days before the MRI it is quite likely that if I had a leak in my CSF that all the laying down and coffee drinking fixed it. OR it is quite possible that I have had MS related headaches that my neurologist doesn’t believe go along with the disease. Or something else. *shrugs*

Anyway this news has cleared the way for me to return to work, and to get NextXperiment going again.

I have decided to do a revamp of what the site looks like and relaunch. All the great momentum I had going before I fell ill has disappated and it’s time to get people excited again.

So look out for more announcements and stuff in the near future on the NetXperiment site.

Unless we are talking to each other. And that is about the pain that is experienced that comes along with the disease. The old literature will still tell you that MS is painless, and for the lucky few that is true. But more and more research is being done into the whole pain thing.

Much remains unknown about the scope, nature, and impact of pain on the lives of persons with multiple sclerosis (MS).

In the present study, 180 community dwelling adults with MS completed a postal survey that included demographic measures, MS disease measures, and several standardized measures of pain, including pain intensity, variability, location, and pain-related interference.

66% of the sample reported pain,

25% of whom reported severe pain.

Persons with pain reported an average of 6.6 distinct pain sites.

Using the Brief Pain Inventory Interference Scale, the average level of overall pain interference was 3.33 (0-10 scale) in the group reporting pain.

The highest levels of pain interference were reported for sleep, recreational activities, and work in and outside the home.

Persons with pain were more likely to report greater MS disease severity, poorer psychological functioning, and poorer health than persons with MS but not pain. Persons with pain were also less likely to be employed.

These findings are consistent with previous research that shows that pain is common in MS, that it is severe in a substantial subset of these individuals and has the potential to negatively impact physical and psychosocial functioning over and above the effects of MS itself.

Source

So there you go some 2/3rds of people with MS experience pain.

Personally my whole headache thing recently would be the worst pain I have experienced that could be related to the disease. Followed by the spastic shoulder and neck muscles, then the burning skin. Oh yeah, and the eye pain in light. But that is about it, take a Mercandol when it gets too bad and go to bed is my motto.

A hormone produced during pregnancy could reverse some of the neurological damage associated with multiple sclerosis, a mouse study suggests.The finding could help explain why women with MS suffer fewer symptoms during pregnancy.

And the results suggest that the hormone - prolactin - might one day be used to treat people with the disorder.Multiple sclerosis involves the destruction of the sheath of fatty tissue called myelin that normally protects nerve cells. 

The loss of this protective layer disrupts nerve signalling and leads to symptoms including loss of coordination.To simulate neurological damage in female mice, Samuel Weiss of the University of Calgary in Alberta, Canada, and colleagues injected small amounts of a myelin-degrading toxin into the spine of the animals.

Some of the mice were then allowed to mate and became pregnant, after which the team injected both groups with a marker compound which integrates with the DNA of new cells, allowing these to be clearly identified.

Read more here Pregnancy hormone reverses MS damage - health - 21 February 2007 - New Scientist

It sure is at the moment.

Still no word on the results from the MRI from the Neurologist. I am being eaten up with guilt about not working. The words of a doctor some 20+ years ago (way before diagnosis but when I was experiencing extreme fatigue and yuppy flu was being seen as the new way to get out of working apparently) play over and over as I sit about not doing much; “stop malingering and go back to work”.

I am still getting headaches but they centre mostly around the pain in my eyes from light and a very stiff neck. I am used to it though, used to it enough to think I can work through it.

Though the other part of myself says it may be time to drop working and wasting what could be the last of the good times and go do what I want to do (to earn a living).

It is the indecision that is killing me! If it comes back tomorrow that there is nothing wrong then it will be back to work for me by the end of the week.

PALO ALTO, Calif. (MCT) - The first $45 million in state money for stem cell research has been allocated to medical researchers, Calif. Gov. Arnold Schwarzenegger announced Friday.The money is part of the state’s commitment to stem cell research to treat or cure spinal cord injuries and diseases such as multiple sclerosis, Parkinson’s disease and Alzheimer’s.

Voters authorized Proposition 71, a $3 billion bond for stem cell research, in November 2004. Despite challenges to the initiative, the governor authorized the state in July 2006 to issue a loan of up to $150 million for stem cell research.”Today we are making history,” Schwarzenegger said. “(Scientists) are opening up possibilities that a few years ago we could only imagine.”

Schwarzenegger talked about the millions of people who would benefit from stem cell research, including his father-in-law, who suffers from Alzheimer’s.”

The initial grants are important because we all know that we cannot afford to wait when it comes to advancing potentially life-saving science,” Schwarzenegger said in a statement.

Schwarzenegger made the announcement in Burlingame, Calif., where the California Institute for Regenerative Medicine’s (CIRM) board met to decide how to allocate the money.”In one day, California made a dramatic step forward,” said Robert Klein, chairman of CIRM’s board.

After President George Bush vetoed federal stem cell legislation in July, Schwarzenegger came to the rescue with the $150 million, Klein said.
Bush cited concerns that the legislation would “fund the deliberate destruction of human embryos” for stem cell research.When asked about Bush’s opposition to stem cell research, Schwarzenegger said, “I am just interested in the decisions we make here.”

Schwarzenegger defies president, puts $45 million toward stem cell research - National News

arnold schwarzenegger human embryos MS Stuff multiple sclerosis regenerative medicine spinal cord injuries stem cell research

People who have multiple sclerosis (MS) for 10 years and have few of the disabling symptoms of the disease are often told they have “benign MS” and that their symptoms will likely not ever occur to the same extent as other people with MS. A new study, published in the February 13, 2007, issue of Neurology®, the scientific journal of the American Academy of Neurology, shows that unfortunately this may not be correct.

After 20 years, the disease had progressed in nearly half of those whose MS was benign at 10 years, according to the study.The study of 169 people whose MS was benign after 10 years found that after 20 years the disease had progressed in 21 percent to the extent that they needed a cane to walk.

Most of the patients had the relapsing-remitting form of the disease, where symptoms come and go. But after 20 years, about 20 percent of the people had developed the secondary-progressive form of the disease, where the disease steadily progresses.

Read More Here

academy of neurology american academy of neurology benign ms MS Stuff multiple sclerosis sclerosis ms

Till about 2pm this afternoon when we went to pick up the MRI films and results. The films were ready, but they had not been written up. *insert exhasperated sigh here*

On teh way back I could feel that familiar nauseating feeling creeping back and the back of my head and forehead start to ache. I put it down to looking at the pictures as we were driving.

Then I decided this evening to test myself out again and take the kids out for dinner. Halfway through the main meal back came the nausea and my eyes and forehead started pounding again. My eyes as I write this are aching from the white bright background.

Anyway hopefully tomorrow the radiologist or whomever writes up the report should fax the results over to the nuerologist, but as he was supposed to have written the report last night anyway I have gone into my que cera cera mode.

My amateur eye says there is nothing wrong on the MRI but I really have no idea and I will be surprised if there is nothing, and I will be surprised if there is something.

Until tomorrow I guess……

Recently added to YouTube or other places

The results of the green room book auction on Today

Click Here

Health Minute on CNN
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YouTube additions re MS Society Movement Campaign

Went for a brain/spine MRI with contrast today. I don’t mind MRIs, in fact I have to fight to stay awake while in there. But today’s MRI was a bit of a chore. Two hours long and with the technician not telling me when I could resume doing something, after telling me I could not do something, like swallowing, meant by the end of it I was really REALLY glad to get out of the tube.

The back of my head is still sore *whimpers*

Still it does give me the opportunity to use a picture I have had laying around for a while!