Personal diary – MS Spasms abruptly disturb a quiet night’s sleep

hi, it has been a while.. and this is an unusual post from me… but… Im scared.. :/

I had a very strange and painful incident this Sunday. My whole body was spasming/twitching in the middle of the night (at about 3am). It lasted a good 20-30mins:( After I took some paracetamol and drank a bit it went away. The strange thing is that it was just like the flu like symptoms I had after my first interferon/avonex injection (as expected, being a side effect), but I haven’t had it since then..and that was ages ago (2005!)

And so yesterday my whole body was aching and even before I went to bed I could feel it in my arms and legs. Not the spasming, but more like pain in the muscles/joints. And every time when I got up to pee last night I had such difficulties walking because my right foot went completely numb! :(

I stayed at home today, couldn’t go to work :( Luckily I have a Tysabri appointment later this afternoon so I will talk to a doctor, see what he/she can tell me.

So what does my mind start wondering about..? I am thinking of death..is it nearby? Is it time? Just thoughts going through my mind..stupid thoughts. Will my boyfriend stay with me despite my potential disabilities? Although he really truly does love me, and I know that, can’t help but worrying on his behalf if he ends up with a challenged girlfriend…even though I know he knew from the beginning what MS could bring… silly huh? maybe you’ve had the same thoughts going through your head.. I just always think of the OTHER person, and how do OTHERS feel and how would this/that make THEM feel – it seems I always put others first rather than me, and my feelings and needs. I might need to work on that… but maybe it is just the way I am and I wont be able to do anything about it..

Just so you know, I have been on Tysabri since January 2009 (after Avonex failed on me following 4 years of weekly injections *chills*) and I have been very happy with it. I also have been confirmed, and re-confirmed that I (unfortunately) also carry the JC Virus.

Anyways, I am worried but I hope it is just a bad relapse… You are more than welcome to share your experiences with me, I’d be happy to hear from you!

Thanks! and stay positive;)
/S

Microchip for us needle “lovers”… !

I just saw this and I personally believe it is great news.. considering that I’m such a needle “lover”…!!

The possibility of using microchips in the future to administer drugs might be a sign of relief for many MSers, among other sufferers…

We are talking about an implantable, wirelessly controlled and programmable microchip-based drug delivery device! It provides a real-time dose schedule tracking and remote control for physicians to adjust treatment schedules as necessary as well as complete automation.

It has been successfully tested on eight Danish women for the treatment of their severe osteoporosis. But the company claims that it could be used for the treatment of other chronic diseases that require treatment w. injections. More trials might and will be needed, and they expect to submit it for approval in 2014. It is expected to be available on the market in 5 years from now.

To read more about this amazing technological advance click on any of the links below:

http://www.reuters.com/article/2012/02/16/microchip-drug-idUSL2E8DG9F220120216

news_id=32618&news_channel_id=143&channel_id=143http://www.advisory.com/Daily-Briefing/2012/02/17/Microchip

http://newsfeedresearcher.com/data/articles_m8_2/drug-microchips-devices.html

http://chealth.canoe.ca/channel_health_news_details.asp?

:)

Ocrelizumab – reduces MS disease activity

As taken from the Medical News Today (Oct. 20.2010) website:

Ocrelizumab is an investigational humanized monoclonal antibody designed to selectively target CD20-positive B-cells, which are believed to play a critical role in multiple sclerosis (MS). It then interacts with the body’s immune system to eliminate CD20-positive B-cells.

Simply put, Ocrelizumab has demonstrated, through trials (they refer to phase II in particular), that there is a significant reduction in disease activity in patients with MS…as measured by brain lesions and relapse rate.

In fact, the reductions were impressive: the total reductions in the number of brain lesions detected by MRI scanning was 96% for 2000mg Ocrelizumab and 89% for 600mg Ocrelizumab (compared to placebo). Disease activity was also reduced significantly…

For more info on Ocrelizumab please visit the Medical News Today link (you can find under “links”).

Disease activity was also measured by reduction in annualized relapse rate (ARR), the rate of attacks or flare-ups per patient-year. At week 24, ARR was significantly lowered versus placebo with a reduction of 73% for ocrelizumab 2000mg and 80% for ocrelizumab 600mgii.

 

Sativex – approved!

I mentioned in a post in March this year that Sativex was to be approved in Q2 2010 – and so it happened! : )

Medical News Today (22/06/2010) has reported that “the first symptom relief drug specifically for people withmultiple sclerosis (MS) has been licensed by the MHRA (Medicines and Healthcare products Regulatory Agency).

Sativex can be prescribed by MS specialists and it should be taken as part of a multi-disciplinary symptom management programme, which includes regular physiotherapy and assessments by occupational therapists.

As previously mentioned Sativex is an oral spray made from cannabis extract and serves to help alleviate MS symptoms of spasticity.

However, it is believed that the treatment is only effective in about 40% of people who take it. This, fortunately, becomes clear within a matter of weeks if it is not working.

Alemtuzumab & MS

A few days ago (April 15th 2010), Medical News Today reported on the use of Alemtuzumab for the treatment of MS. The research in question reported that a significant percentage of MS patients who received Alemtuzumab remained free of clinically-active disease.

More precisely, 71% of the patients treated with alemtuzumab remain free of clinically-active disease as much as three years after most patients received their last course of the investigational compound. The data were presented at the American Academy of Neurology annual meeting.

This trial was compared Alemtuzumab to Rebif® (interferon beta-1a) in patients with early, active, and relapsing-remitting MS, who had received no prior therapy. For the details of the trial and more on the results visit the Medical News Today website link to the right ; )

What I think is important to highlight from this trial is that researchers believe Alemtuzumab to target the immune system cells responsible for the cellular damage (found in multiple sclerosis), while sparing other immune system elements.

Groundbreaking MS research to be announced April 10-17th

From the Medical News Today website (article dated April 14th 2010, see under Links to the right)

At the American Academy of Neurology (AAN) Annual meeting, among other things, a potential new drug for the treatment of MS, and surprising trends showing a reduction in the disease’s severity…

Teriflunomide, is an investigational oral medication for relapsing-remitting multiple sclerosis (RRMS)… The study analyzed teriflunomide added to ongoing treatment with glatiramer acetate, a currently prescribed medication, and determined that teriflunomide was safe and effective as part of combination therapy.

And most important of all:

MRI studies revealed that teriflunomide also proved to be effective at reducing the size and volume of lesions on the brain.

“While our study was designed to evaluate the safety of teriflunomide, we determined that in addition to being safe it was also effective in reducing the size and number of lesions in people with RRMS,” said Aaron Miller, MD, Professor of Neurology, and Medical Director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis, Mount Sinai School of Medicine.

“Further data are required to evaluate efficacy of this combination therapy, but the results are promising.”

One can just comment…that it really sounds like the data is promising! if this drug manages to REDUCE the size AND volume of lesions on the brain…wow!

MSers: Protect your brain from MS – with exercise!!

“For a long time, MS patients were told not to exercise because there was a fear it could exacerbate their symptoms. But we’re finding that if MS patients exercise in a controlled setting, it can actually help them with their cognitive function.”

Yes, it seems that exercise is also good for us MSers! As you can guess from the above, new findings reveal that MS patients who exercise a lot perform better on tests of cognitive function than the less-fit MS patients! Here are the main takeouts from the article…

“We found that aerobic fitness has a protective effect on parts of the brain that are most affected by multiple sclerosis,” said Ruchika Shaurya Prakash, lead author of the study and assistant professor of psychology at Ohio State University.

“As a result, these fitter patients actually show better performance on tasks that measure processing speed.”

“Physically fit MS patients had fewer lesions compared to those who weren’t as fit and the lesions they did have tended to be smaller,” Prakash said. “This is significant and can help explain why the higher-fit patients did better on tests of brain functioning.”

Aerobic fitness was also associated with less-damaged brain tissue in MS patients, both the gray matter and white matter!

….

The study found that fitness in MS patients was associated with larger volume of gray matter, accounting for about 20 percent of the volume in gray matter. That’s important, Prakash said, because gray matter is linked to brain processing skills.

“Even in gray matter that appeared relatively healthy, we found a deterioration in the volume in MS patients,” she said. “But for some of the highest fit MS patients, we found that their gray matter volume was nearly equivalent to that of healthy controls.”

In sum, all of the three MRI tests conducted in this study showed that parts of the brain involved in processing speed are all negatively affected by MS but less so in patients who are aerobically fit.

Other researchers have also found that exercise promotes the production of nerve growth factors, proteins which are important for the growth and maintenance of neurons in the brain.

“Our hypothesis is that aerobic exercise enhances these nerve growth factors in MS patients, which increases the volume of the gray matter and increases the integrity of the white matter,” Prakash said. “As a result there is an improvement in cognitive function.”

Prakash and her colleagues plan to extend this research by studying whether exercise interventions with MS patients can actually improve their cognition and have positive physical effects on the brain.

Details on how the study was conducted can be accessed through the Medical News Today website – the link can be found on the right.

(article dated February 19th 2010)

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