I have been diagnosed with RRMS for 25y now. I have had steroids, Beta-interferon (Rebif), Glatiramer Acetate (Copaxone) and now Dimethyl Fumurate (Tecfidera) from the DEFINE trial onwards. I take high dose prescribed Cholocalciferol (Vitamin D3) 10000iu every other day in order to keep a level in the body of approx 5000iu as a constant, and after a filthy bout of neuropathic pain I am now prescribed a moderate dose of Duloxetine which is actually an anti-depressant but has been shown to work for neuropathic (I call it phantom pains) pain as well. I tried the usual one whose name I forget but theat sent me to sleep so I lobbied for a change. Additionally, I was prescribed Modafinil a while back for my fatigue.
I used to work in pharmaceuticals on the business side, hence my choice of generic names first as that helps clarity. Different proprietary (Brand) names are used in different markets and I can’t keep up with what is what.
In the last 5y I have gone to university (odd experience at time for an old guy with a kid) and I recently married again. I ended up doing an MSc in Politics with a huge statistical and research element. Stats being numbers the concepts cross subject areas.
One thing I have noticed over time is the bad effects the lack of understanding can have.
Receiving a diagnosis is a scary thing. I get it. I dealt with it by pretending nothing was wrong for the first five or so years. Just plain denial. Now I’d like to help people, where possible, be able to get their head around the information they hear/see with regards to MS. So much is just weak and untrue it beggars belief.
Whether you are newly diagnosed or a long-term sufferer the MS treatment world can be a baffling one. Staistics this, data that, AI is changing life, PML (Progressive Multi-focal Leukoencephalopathy in case you were wondering) as a terrifying sounding side-effect and so on.
How do you know what to make of everything? Concerned friends and family, and sometimes complete strangers, seem to know about the best things for your MS, without knowing the details of your diagnosis and having specifc (mediacal) training in neurology.
I am happy to try and answer a question – PM me if you like – but more importantly, read this. I didn’t publish this, but it IS a great guide for the layman. It will help you ask better questions and get better answers. Knowing the basics also works as a brilliant Bullshit Detector too. Something you’ll need to be able to develop now you have been chucked into this world of medical attention, treatment options and so on.
Please read it. Any issues or questions then DM with the page number and I’ll explain it to you.
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