4. Cannabis

This is a very contentious subject. Cannabis is a drug that is natural and is of a massive benefit to a lot of people with MS, but it is illegal. Doesn't make much sense when you bear in mind the 'Big Pharmas' are selling very expensive man made drugs that seem to have little, or no effect to some of the MS population. The cynic in me wonders how many shareholders in pharmaceutical companies are involved in various Governments and their decision making processes around the globe. Ignore me, it's late and I've been drinking Stella. 

There is a UK based company called GW Pharmaceuticals who have developed a medicine called nabiximols. It is better known by its trade name - Sativex. Sativex is a cannabis based throat spray, albeit with all the. 'good stuff' taken out and since its release a year or so ago, the only media attention it has had is the fact that you cannot get your hands on the stuff. Here in the UK, our primary care trusts won't touch it. So people in the UK have massive difficulties getting access to a drug that has been manufactured in the same country, despite it has had all the effects you get from the 'street' version already taken out of it

You go into hospital with a sore finger and they'll pump you full of opiates, to stop your pain, yet you cannot have cannabis in any shape or form, despite its proven benefits. This is not a case of some 'stoner' banging on about 'legalising the weed', it is just general bewilderment that Sativex is such a difficult drug to get your hands on.

To me, it's a no brainer. Let us have access to drugs that help us. 

Dan

3. Self Catheterisation

I have been performing intermittent self-catheterisation for about 5 or 6 years. I catheterise every time I go now. At first it was a few times a day as I didn't like the idea of carrying the cumbersome catheters and bags around with me everywhere I went. 

One day I did a trial for a new type of catheter. It is made by a company called Coloplast and is called the Compact Speedicath Catheter. Compact by name, compact by nature. 

It's great! It comes in a pocket-sized green tube, 7 or 8 inches long, extending to the necessary size when removed. No more need for a rucksack carrying standard catheters around, and no more need to still have a half full bladder AFTER I've been to the toilet!

I got asked in July if I wanted to try out Coloplast's new catheter. They told me there were only 3 people in the country that would be trying them. 2 women and me. "Hang on, that will make me the only man in the country to have used one?" I asked, full of my own self-importance.  "Yes" they replied, clearly telling me fibs, as other men would've tested them out in the design stage. 

The catheter is called the Speedicath Compact Set. It is identical to Coloplast's compact catheters that are being used all around globe, but it has a bag attached. 

It couldn't have come along at a better time, because as my MS progresses, I am spending more time in a wheelchair and transferring from chair to toilet seat can on a bad day be very troublesome and totally depleting. Therefore, when on said bad day, I can pass urine without leaving the 'comfort' of the wheelchair. 

Also, if I need a wee in the middle of the night, when my anti spasticity drugs have well and truly worn off, I can sit on the edge of the bed and go, rather than stagger to the toilet like a drunken idiot about to fall over. I find falling over easy, it's the getting up part that is difficult!

The bag folds nicely around the end of the catheter, is easy to unfold, courtesy of a neat Velcro strap and comes in an equally easy to open tube that is no longer than the current compact catheter that's on the market.  The tube is slightly wider than the current compact catheter, but when you realise it contains an attached bag, you can see just how compact it really is. 

Once you have emptied the bag, you can fold the bag back up and fit the catheter and the bag back in the tube, put the lid back on and carry on with your day. 

I've been itching to talk about it for 2 months now, but have been sworn to secrecy. Now that it has hit the market, I don't have to keep my trap shut any more. Hurrah!

Dan

2. CCSVI

My last blog was a little bit suggestive about pharmaceutical companies and their motives. This is just an opinion that I share with many other people on the internet. Isn't the web a fantastic medium for being loud and controversial whilst hiding behind your computer terminal? I am not trying to be in any way controversial, I am just talking about this illness that we have and I was just sharing my beliefs. Right or wrong, it is my opinion, I'm not stating it as fact. Writing about Gilenya when little changes can be quite tricky. 

Anyway, to keep up the 'conspiracy theory', I'll mention another one doing the rounds. Before I do though, I must say that  it is a theory that I do NOT follow. You ready for it? Here it comes: MS is not an autoimmune disease at all. The damage is caused by veins that are too narrow to allow the blood to drain away properly. 

The Chronic Cerebalspinal Venous Insufficiency (CCSVI) theory has been doing the rounds for a while now. 

I personally believe that CCSVI is a condition of MS, nit it is not a cause. Maybe it is a different illness to MS completely, but they both have the same result - lesions. Maybe there are other causes. Maybe there are other illnesses that are diagnosed as MS that actually are not. 

Take Lyme disease, for example. Read a list of the symptoms of Lyme disease and you can be forgiven for wondering if you too have been mis-diagnosed. There is a simple way of ruling out Lyme disease though: Lesions. If your MRI scan results show any scars on your brain or spinal cord, it definitely isn't Lyme. 

CCSVI can be treated. It is a relatively straightforward operation where they insert balloons into your veins and pump them up with the intention of widening them. Approximately, a third of people who have the procedure have noticeable improvements, but it isn't one that is available on the NHS. In fact people have gone to back street clinics all over the globe for four, even five figure sums for treatment that needs to be done every few years. It isn't a one off operation 

I believe that some people who are primary progressive and skipped the relapsing remitting stage could have the potential to have CCSVI and not MS. 

I also believe that the relapsing remitting, then the secondary progressive phases of MS is autoimmune, so it definitely is MS. 

Dan

1. Big Pharma

There is a new drug, potentially for people at a further progressed stage of MS called laquinimod. It is an oral therapy that is made by a company called Active Biotech, who are in partnership with Teva - the company that make Copaxone. 

I'm surprised that the progressive side of MS hasn't already been tapped into by the drug companies. Up until now they've put all their eggs in the 'Relapsing remitting' basket, which from a business sense is wrong. A person with MS will generally spend a lot more of their life in the progressive phase of the illness as opposed to the relapsing remitting one. Therefore, if they can come up with a treatment for primary and secondary progressive MSers, they'll be able to sell their medications to the care trusts for the rest of the patients life, as opposed to the, 5+ years that an MSer will be 'just' relapsing remitting. 

Now that might all sound a bit cynical, but lets be honest, treating MS is BIG business. We are talking a multi-billion pound industry here and all these companies would go bust if they ever did find a cure for MS. 

Take, for example, the company that have the licence to sell Lemtrada. It is called Genzyme and 2011, a French pharmaceutical company called Sanofi bought them for over $20 Billion! That is not a typo. They paid over twenty billion US dollars, or +$20,000,000,000. They won't be looking for a cure anytime soon. 

This is why I believe the Pharmas are only interested in treating MS and certainly not curing it. Our best bet is with all the research into Stem Cells. There's the answer, it's just waiting to be discovered. 

Anyway, that's my conspiracy theory over. I am supposed to be talking about Gilenya, but I have no new news on the current treatment that I am on. The symptom relief I get is stable. Well, bar a few heat related hiccups I've had of late, but in the northern hemisphere, summer is over, so my nagging eye related and neuropathic pain issues have died down too. 

Maybe Teva could trial Copaxone and laquinimod? I'd give it a go. 

Dan