Treatment, honey or not

Everyone with MS will tell you there is one common factor and that everyone has different symptoms. If you don’t have MS that simply sounds nuts, different symptoms surely mean different illnesses. That I am sure is one of the reasons why it is proving to be difficult to find a cause or cure.

Over all the years since my diagnosis there have been glimmers of hope with new discoveries and so called breakthroughs and all have either disappeared from discussion, as they are working their way through trials, or simply disappeared as they fail to show results. I suppose the one that there was the most publicity about was the possibility of using stem cells to repair the Myelin damage. Many sufferers paid huge amounts of money to clinics around the world for very mixed results, from what I have read since, there is still hope that this theory will actually supply improvements in the future but it is no longer being hailed as the long awaited cure.

Just yesterday I read research from Australia using protein to block the damage to the nerves, not a cure but hopefully a way of halting any further damage. Something that would be of fantastic use to someone like me. If I could at least be held at this level, I could live with that. This morning through SecureACure4MSĀ© on Twitter, I read an interesting paper on the use of infection by parasitic worms, it is starting to show results as well in trials, but like all trials from start to available is around 10 years in the country it is developed in, then several more to be passed by the NHS for use.

There is a great deal of research going on but there are also a great number of people around the world who also read these medical papers and don’t see something that is there to help people who are desperate to have the simple right of good health, but as a honey pot to be drained. Although the internet is a fabulous resource to those suffering with MS, it is also putting the same information in to the hands of thieves and charlatans. I have seen many documentaries and programs following stooges sent to see these “Doctors” and to go through treatment. The vast amount of money taken is mad and bankrupts many, but when you are desperate you will do anything. In Britain I feel we are slightly protected by the NHS as in general if they refuse the treatment there is generally a good reason. Oh before someone pipes in with the cost issues, I actually frequently agree, there are limited funds and the funds have to be used for those who would most benefit. Having stirred the hornet nest, lets move on.

I have myself approached my Neurologist over articles that I have read recommending this or that treatment and not once has he done anything but smile, nod his head and say no for loads of different reasons. I am not in anyway saying that I haven’t received appropriate care I have but I have learned not to get excited by something I read and to wait for those responsible for my care to agree that there would be a benefit. As the most common form of MS is relapse remitting understandably that is the form that the most research is done. I belong in a tiny group of people, just 5% of all sufferers, the research is limited as are the treatments.

I hope that I am wrong but I have accepted that there is little chance in my life time of anyone coming up with a cure for MS or even something that could really stop my MS getting worst while there is still a point in stopping it. Although I do not see the prospect of my MS being dealt with, I hope that I along with all other sufferers will supply guinea pigs and data for those still to come.