Obstacles in life are important..?

Every obstacle presents an opportunity to improve our condition.

MS funding is declining!

For those of you in the US… please take a minute to read this and sign the petition to continue funding future R&D for MS. It is very important

Thank you

http://capwiz.com/nmss/issues/alert/?alertid=9167296&type=CU

Aimspro Info

What is Aimspro?

Aimspro is the trade name for an MS treatment produced from the serum of blood obtained from specially vaccinated goats. The serum is obtained from the goats in the USA and then sent to the UK for purifying.

Who makes Aimspro?

Daval International is a UK based pharmaceutical research and development company. Founded by venture capitalist David Shotton from London in 2000.

How is Aimspro administered?

Patients are taught to inject themselves with the drug in the upper arm, thighs or buttocks using a needle very like that used by diabetics.

How does Aimspro work?

Aimspro uses Polyclonal Antibodies from the serum of goats that have been inoculated with a number of vaccines to generate neutralising antibodies. The exact action is not fully understood and the technique is subject to commercial confidentiality.

Does Aimspro work?

The trials have been very positive with many patients reporting significant improvement. There have been very few reporting no improvement.

Are there any side-effects?

The only reported side-effects have been a slight irritation at the injection site.

Is Aimspro a cure for MS?

No, it is a treatment to lessen the symptoms of multiple sclerosis, including actual partial reversal of some symptoms leading to a better quality of life for many patients.

How can I obtain Aimspro?

Aimspro is not generally available as the drug has not yet been licensed. The product is currently undergoing Phase II trials and it is hopeful that the drug may be approved within the next year or two. In the meantime you can sign the petition being run by the Aimspro Patient Lobby Group, Proventus.

There is hope, however, Daval are now reported to be running ‘Specials‘ or Aimspro on named patient basis. Presumably this is available only in the UK.

Where can I get more information about Aimspro?

The Multiple Sclerosis Resource Centre publish a very good magazine, called New Pathways that has regular updates and news about Aimspro.

Are the goats harmed in the manufacture of Aimspro?

No, on the contrary, they are very well cared for. They live on a farm in the USA, are looked after by qualified carers, are certified free of any disease and have the freedom to roam around in large paddocks. Extracting the blood from the goats is very like people donating blood.

Aimspro – yet another Multiple Sclerosis treatment

Aimspro®

Aimspro shows great promise for the treatment of a range of neurological and inflammatory conditions including multiple sclerosis, CIDP and rheumatoid arthritis. Aimspro has been characterised biochemically and its mode of action has been determined. It comprises of a set of peptides that act to stimulate the release and regulation in the patient, of a molecular cascade that modulates the Hypothalamo-Pituitary-Adrenal (HPA) axis; a system found to be dysfunctional in some patients suffering from Multiple Sclerosis. In addition, Aimspro has powerful anti-inflammatory properties as it contains cytokines that induce a predominantly TH-2 anti-inflammatory profile in the patient thus relieving symptoms in a wide range of inflammatory conditions.

It has become apparent that some of the peptides in Aimspro are regulated and bound by specific carrier molecules that may regulate the action and release of their ligand and are probably necessary for the appropriate regulation and pharmacokinetics of the molecular machinery. The carrier molecules also function as a slow release mechanism, releasing bioactive components over several days.

Compared with conventional drugs, which generally comprise one molecule destined to interact with one target in the body, the unique molecular complexity of Aimspro enables it to interact with many molecular targets in concert, hence bringing about a wide range of physiological benefits.

MS problems & frustrations

I have been noticing that there is a general feeling among all of us MSers (or is it that I just noticed the ones I recognized myself with?:)

I, too, am not feeling as great. I believe my MS is getting worse…or am I just having an attack?

I have become a bit less social I think…hmm not sure if it is true. I know it is due to my MS. I have been having peeing problems (can’t empty my bladder fully and as soon as I step out of the house I need a toilet! which is a problem especially when there isn’t one around!). I noticed that when going out (if ever) this problem is even more serious especially if I drink beer (from now on – no more beer – it wasn’t something I liked to drink anyways! So…good;). I also noticed that I decline parties and other social events because I am tired or because I think I am not going to be able to walk (or I will…but it would be very tiring so why bother…). I feel that I have become an orange skin accumulator… basically I am simply at home most of the time, I do not exercise anymore (which I am not happy about at all…! I want to go back to doing some sports)… I am considering starting on yoga… and maybe aerobics again.

What else? I am also wondering about this MS… Where is it going? How long do we have to wait for a cure? The article I previously posted is really impressive… I know my MS hasn’t advanced yet (to the point where I can’t walk at all anymore or something like that) but I feel like I am getting tired of fighting it already… why?

Wow… I am really frustrated… REALLY. But on top of all this… I know I have to go on fighting it, and I will! I just wanted to say that it is OK if we feel down sometimes…it is all part of having MS…

I feel like I wanted to say something more…but now I forgot… Can’t wait to go see my doctor for the regular 6-month check-up…planning to have a nice chat with her to see what the progress of my MS is so far…and request an MRI scan.

Best to you all!

Heads up;)

New Multiple Sclerosis Treatment Reduces Relapse Rate By 90%

Article Date: 22 Jul 2006 – 14:00 PST

Multiple Sclerosis patients who receive a brief course of Mitoxantrone, and then Copaxone, experience a reduced replase rate of 90%, according to a five-year study carried out at The Walton Centre for Neurology, Liverpool, UK. A further ten controlled studies are being launched at 10 centres in the UK. A reduced relapse rate of 90% means the difference between being bedridden and holding down a job and actively raising a family for many MS patients. You can read about this study in the Journal of Neurology, August issue. Mitoxantrone is used for treating cancer patients, it is so powerful that it can only be used for a short time. Copaxone is a slow-acting disease-moderating drug for MS patients. In this study, doctors decided to overlap the treatments because they wanted to give some time for copaxone to build up its effect. Head researcher, Dr Mike Boggild, said “This regime has proved remarkably effective. Though there are certain risks, associated particularly with use of Mitoxantrone, we have been able to limit these by using this agent for just a short induction period. Balanced against the high risk of early disability for these patients, the outcomes appear to justify this approach.” Dr. Boggild started treating with Karen Ayres, 28, in 2002. Karen Ayres has MS. Since 2002 she has not suffered any relapses at all. Ayres said she came to see Dr. Boggild during her second relapse. She was unable to walk or feed herself – she was barely able to wave her hand. A few weeks after treatment started she walked out of the rehab centre unaided. She says that since the beginning of this treatment she has managed to lead a completely normal life – she has travelled to five continents and is currently doing a PhD in Psychology at Leeds University, UK. Ayres was one of 27 patients treated during this open trial. Many of them experienced similar remarkable reductions in relapses. This study was not a controlled one. This means there was not one group of patients on the drug treatment compared to another group on a placebo. The ten new studies are controlled ones. The treatment does have potentially serious side-effects, including leukaemia and cardiac problems. However, for many MS patients, it is still worth the risk.

Journal of Neurology

Written by: Christian Nordqvist

Editor: Medical News Today 

Some people I know say the cure for MS is somewhere near…Hope they are right.

Is MS Fatal?

wow…I found this just now when surfing… shocker.

As a group, people with MS have a life expectancy estimated at 6-7 years less than the general population. The vast majority of people with MS die from the same diseases as everyone else–heart disease, cancer, or stroke.

Death caused directly by an MS lesion is extremely unusual. Without adequate medical care, it might result from a lesion in the part of the brain that regulates breathing or from large areas of demyelination that interfere with life-supporting systems in the body. Certain complications of advanced MS, such as severe urinary tract infections, pneumonia, or extensive skin breakdown, can also threaten life and may prove fatal even with adequate treatment. Modern antibiotic therapy and sophisticated supportive care strategies make it possible to control these problems in most cases. Severe untreated depression is also known to be responsible for the relatively high suicide rate among people with MS. The Society is committed to educating our community about the importance of identifying and treating MS-related depression.

The contradiction is apparent but not real: severe MS or its complications may be fatal, but the likelihood is so rare that MS cannot be considered a fatal disease.

COPYRIGHT 2002 National Multiple Sclerosis Society
COPYRIGHT 2002 Gale Group

Contradicting? Yeah..but still scary! :p

Epidemology of MS

Multiple sclerosis (MS) is the most common primary neurological disorder of young adults in most countries, affecting approximately 2.5 million people worldwide. It is a common cause of disability: up to 60 percent of patients are no longer fully ambulatory 20 years after onset of the condition.

This burden of disability can markedly reduce the person with MS’ ability to perform everyday activities and significantly impairs their quality of life. Moreover, because the disease often develops at about the age of 30 years, there is a substantial financial cost, both to the person with MS and their family and to society as a whole, resulting from loss of productivity.

Multiple Sclerosis World Map

Data from 4 decades ago… probably not the case anymore, but it is still pretty close to reality (they say that MS is more present in the northern hemisphere…)

for an updated map check out the link under ‘comment’ below

Yet again…

injection day….not fun. Many wonder about MS…it is actually quite a strange and unpredictable disease that varies from person to person. This makes it additionally difficult for the person with MS as well as the people around him/her to understand what is going on and why, as well as accept it… yet another tough fight for those involved (as if life hasn’t given us enough already :p )

MS GDP

The MS Global Dinner Party is going to be taking place on February 24th.. I am not yet quite sure what kind of party I am going to organize in order to raise money for the fight against MS…but I think food will definitely be part of it:) gotta think of some games to do..or something…you are all welcome join me and many others around the world and organise your own MS GDP;)

– for more information visit www.msif.org –

First signs…

Following Lhermitte’s sign, AKA the Barber Chair phenomenon (the electric shock-like sensations that extend down the spine and all the way to the limbs after flexing the neck) and subsequently optic neuritis on my right eye, it was in early December 2004 that I started various tests. The diagnosis came about a month and a half later – it was Multiple Sclerosis. Up to that day, I didn’t know what MS actually was. The big eye-opener came when I was told that I have to control the disease once weekly by administering interferon beta 1a intramuscularly! Not only was I told that there is actually NO cure for MS but also that I had to use needles in order to control it! I have always hated needles and so the idea of having to inject myself once a week simply devastated me. For a whole month, I amazingly injected myself with no help whatsoever – no problems! I believe that it is after this period of incomplete awareness when I realized what was going on was actually a very serious thing; MS IS an incurable disease that will stay with me forever. After that month I simply could no longer inject myself; I totally blocked. A month of administering the injections with the help of my nurse passed by and I was finally given a personal injector. This was a great help for my troubles. It was so much easier to just put the injection in the injector, press the button and insert the medicine… What a relief! Since then I have been using this little device (long over a year now), but from time to time I do come to think that I might do without it (albeit I never actually tried to do so). The acceptance period was a though one. I believe I am still not over that phase, but I am definitely moving forward on the acceptance scale.

Life

“Life should not be a journey to the grave with the intention to arrive safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out and loudly proclaiming: Wow! What a ride!“

MS

What is Multiple sclerosis?

Multiple sclerosis (MS) is one of the most prevalent diseases of the central nervous system (brain and spinal cord) and directly affects an estimated 2.5 million people around the world.

Myelin, one of the fatty substances that sheathe, insulate and protect nerve fibres, aids the rapid transmission of nerve signals throughout the body. It is the speed and efficiency with which these impulses are conducted that permits smooth, rapid and co-ordinated movements to be performed with little conscious effort. MS attacks this myelin, disrupting the ability of the nerves to transmit signals to and from the brain and producing the various symptoms of MS.

The sites where myelin is lost (plaques or lesions) appear as hardened (scar) areas. In MS these scars appear at different times and in different areas of the brain and spinal cord.

Quick Facts…

• More women than men have MS, with a ratio of two men to three women affected.
• Sclerosis means scars; these are the plaques or lesions in the brain and spinal cord.
  
• MS is not directly hereditary, although genetic susceptibility plays a part in its development.
  
• MS is not contagious.
• There are a wide range of symptoms including fatigue, balance and co-ordination problems and visual and cognitive disturbances.
• There is no drug that can cure MS, but treatments are now available which can modify the course of the disease.