A Researcher in Waiting - Part 1

Following on from the NICE and Easy post where I'd sort of found out that, according NICE, Interferon wasn't going to be offered in the UK, I felt that couldn't be the end of the matter and so I widened my search criteria for treatment plans.

Meanwhile, although I still had some mild side effects from the corticosteroids (and one more course to go), they were slowly but surely, helping to alleviate the facial numbness. So much so, that by the end of the 2nd day (the evening I had got back home), the outside of my nose felt relatively normal, and my left cheek felt strange only when I pressed or tried to move it with my hand.
Since I'd never suffered any type of palsy, I was reasonably happy so far with my progress.

I spent the evening chatting with my wife and sister (I should point out that my wife and my sister are NOT the same person - my sister was over to visit and offer support). I was coming more to terms with the MS diagnosis, but even then (as now, as I write this), I didn't feel that MS was going to be a deciding factor in my life if there was anything I could do about it.

Now, I don't mean I suddenly discovered some latent grim determination and fortitude...I just didn't feel that MS was the thing that would be defining my life. Well, apart from writing a blog and changing my diet and getting vitamin supplements and reading loads online and ordering books and...
I mean, apart from all that, what have the Romans ever done for us I wasn't really thinking about the MS at all. I was convinced I would end up doing a lot of different things because of it, but that it would just become an aspect of life and hopefully, easily ignored if treated right.

And now a sensible word of caution!
I'm not a DR (gasp) - and if anything written anywhere in this blog (at least by me...) stirs you into some sort of action, please understand that it still is your decision.
I'm not sure I am intending to give advice as such, but at least make you aware of other options.

Also (as mentioned already), I've not started to take any MS modifying drugs. I am however attempting to control disease progression through diet and vitamin supplementing.

To understand more about those, please see the links on the right-side of any of the blog pages, particularly:

• OvercomingMultipleSclerosis & Professor Jelinek
• Dr Roy Swank and original Diet based approach

Also, I've only (at the time of writing) been diagnosed for a month - so I've got a while to go yet before I begin to understand if my approach is working.

Right - Internet time.
I can't remember exactly what I was searching for, nor what I typed into the search engine, however, one of the very first links I found (might have been a blog site!), ended up pointing me to http://www.swankmsdiet.org/.
I don't want to copy/paste reams of stuff from other websites but here is something very interesting:

The rise of MS in recent decades has mirrored the increase of highly saturated animal fats in the Western diet, which caught the attention of Dr. Roy L. Swank, Ph.D. He researched and devised what is now known as the Swank MS Diet, which he first introduced in 1948.
60 years ago Dr. Roy Swank discovered that a low-fat diet, very low in saturated fats and polyunsaturated oils, helps MS patients live healthy and productive lives. Also low in red and other fatty meats, high in grains, fruits and vegetables, it is simple to follow and in many cases alleviates chronic symptoms. Some of his very first patients are still ambulatory and leading independent lives thanks to following Dr. Swank's regimen for the last half-century.

For an understanding of why the diet appears to offer a great deal of hope, allow me to put the following quote from wikipedia (http://en.wikipedia.org/wiki/Swank_diet):

Research

Swank's research on 144 patients over a 34-year period was published in The Lancet (1990). The study showed that those who followed the diet had not shown any significant deterioration of their condition over a 34-year period, while those that did not follow the diet did significantly deteriorate over the same period.

Interesting? I certainly thought so. At which point, I wondered how much protection Interferons might offer (it should surely be at least as good as that apparently offered by the Swank diet).

Quotes that follow are from various sites such as wikipedia (backed up of course by the reference notes) and also http://www.mstrust.org.uk/atoz/betaferon.jsp

Interferon beta 1a (known as Avonex, Rebif or CinnoVex)
While these drugs improve certain diagnostic test results they do not cure MS and many patients report no perceived improvement and serious side-effects that substantially reduce quality of life. Over time, physiological tolerance and reduced effectiveness can occur due to the development of antibodies to the drugs and side effects may persist even after discontinuation.

Interferon beta 1b (known as Betaferon (UK), Betaseron (North America))
Betaferon is a disease modifying drug, licensed for relapsing remitting multiple sclerosis and some people with secondary progressive MS. Studies have shown that on average Betaferon reduces the relapse rate in people with relapsing remitting MS by about a third and also reduces the severity of those relapses that do occur.
Patients taking Interferon beta-1b may develop neutralizing antibodies to the medication.

Glatiramer Acetate (Copolymer 1, Cop-1, or Copaxone)
A 2004 Cochrane review[4] concluded that Glatiramer acetate "did not show any beneficial effect on the main outcome measures in MS, i.e. disease progression, and it does not substantially affect the risk of clinical relapses."
A 15-year followup of the original trial compared patients who continued with glatiramir to patients who dropped out of the trial. Patients with glatiramer had reduced relapse rates, and decreased disability progression and transition to secondary progressive MS, compared to patients who did not continue glatiramer. However, the two groups were not necessarily comparable, as it was no longer a randomized trial.
More serious side effects have been reported for glatiramer acetate, according to the FDA's prescribing label, these include serious side effects to the body's Cardiovascular System, Digestive System (including Liver), Hemic and Lymphatic System, Musculoskeletal System, Nervous System, Respiratory System, Special Senses (in particular the eyes), Urogenital System.

From this website, the comparative costs of use seem to be around $1000 (it's a US website)
http://onlinelibrary.wiley.com/doi/10.1111/j.1524-4733.2004.75007.x/full

You can perhaps understand why I was keen at least to explore as many other options as I possibly could before starting any of the possible drug treatment plans.
A further consideration of mine was, what if the Spanish system allowed me to take the Interferon type drugs, but these were not supported/prescribed for use for me when I got back to the UK?
Who on earth would want to start a course of medication and just as it was (potentially) building up a protective element, then be forced to stop taking it.

No - this wasn't going to be suitable at all.

Of course, it must be understood here, that I am not completely dismissing these drugs out of hand. They are still on the table I suppose, as an eventual option, but considering the mildness of my symptoms, I felt that heavy duty drugs were the old sledgehammer/nut problem. Over the top for now and, according to what I had read, they could seriously compromise my quality of life (which at this time, is really rather good).

Hmm - more reading required.