Update on What God or the Universe Has in Store for Me

Update on What God or the Universe Has in Store for Me December 7, 2018

It’s the universe, silly.

The last time that I spoke to you, I told you that I’ve been diagnosed with multiple sclerosis. Since then, I have had a further appointment and today even had a second MRI scan. It turns out that, from the last appointment, I was diagnosed with Primary Progressive Multiple Sclerosis or PPMS. I am, rather unfortunately, in the 15% of people who are diagnosed with the less good version of multiple sclerosis. Usually, if you are diagnosed with MS over the age of 40, you are more likely to have this variety, which is generally equally gender split.

And the worst part about having PPMS is that there are no regular treatments available, at least not on the NHS.

The best way to explain the different forms of MS to the layman is with this picture below:

Basically, the most common forms of multiple sclerosis are the relapsing/remitting varieties. With these, you relapse into inflammation episodes where your body and mind are affected but these episodes then go into remission and you either return to the way you were or to a slightly worse state. These can be treated with what are known as disease-modifying drugs or DMDs. These drugs delay or put off subsequent relapses so that the gap between relapses is increased, hopefully substantially.

However, after some time, usually when a patient is older, relapsing/remitting multiple sclerosis enters a secondary phase. This secondary phase is progressive whereby the symptoms gradually progress into forms of greater disability without relapsing or remitting. The speed with which the patient deteriorates is highly variable.

Because God is a bastard, or the universe is uncaring, I have PPMS. With this version of MS, I have entered something akin to the secondary phase mentioned above. I bypass the relapsing/remitting phase and start off in the primary phase with progressive MS. Again, the speed that my condition will progress, both physically and cognitively, is unpredictable. I have to hope that, if I do all the right things as far as diet and supplements and this and that are concerned, I will be able to keep the progression if not at bay then slower than otherwise.

There is one treatment that is available to me and this is HSCT, or hematopoietic stem cell transplantation. As the MS Society describes it:

Haematopoietic stem cell transplantation (HSCT) is an intense chemotherapy treatment for MS. It aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your stem cells.

Results have shown that HSCT is most effective for people:

  • with signs of active inflammation, as seen by frequent relapses alongside new or active lesions on an MRI scan
  • who are early on in their disease course
  • without significant disability (EDSS score of less than 6.5).

These results form the basis of European Guidelines that most clinics use to assess who is eligible for HSCT.

It will mainly include people with highly active relapsing MS who are still having relapses despite taking disease modifying therapies (DMTs).

If someone has progressive MS and still has active inflammation (either relapses or lesions on an MRI), HSCT may be able to stop or slow this.

But HSCT can’t regrow nerves or repair damaged myelin, so it can’t help those with advanced progressive MS who are no longer having relapses and don’t shown signs of inflammation on an MRI.

Researchers are working hard to find effective treatments for people with progressive MS.

Agressive chemotherapy sounds lovely.

This treatment was popularised on BBC News recently:

The treatment is available on the NHS, but only in London and only if you qualify under a number of criteria. Most people go for the treatment in Britain privately. The best place, it seems, to get it done is in Moscow as they have been doing it really well since 1999. I’m a member of many Facebook groups to do with this treatment so that I can gather as much information on it as possible. It is likely that I will, either on the NHS or privately (depending on finances), go down this route.

I’ve certainly declined a little both physically and cognitively since I last spoke to all about this. It’s what is to be expected. I might write something in the future on the psychology of dealing with a degenerative disease like this. I’m still working as a teacher but do wonder how long I will be able to sustain an incredibly stressful job when stress is one of the major contributing factors to MS.

As I’ve mentioned before, I will continue to write as much as I can and as often as I can. Again, if there are any readers out there who wish to contribute to this blog, please let me know as it will alleviate the burden!

Finally, it goes without saying that this is not a piece to garner sympathy but one to explain my situation for both interest and so that you understand if I occasionally miss the opportunity to make a couple of posts. As you so kindly often do, if you find typpos in my peaces, please let me no as quickly as possable. They creap in their due to my incredibly cumbersome tiping or speech to text that goes awrye.

Big love to y’all.

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