@Lysadevon 

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Lysadevon

Cancer or disability? Or neither?

Hi everyone.. in desperate need of some advice tonight regarding my future and treatment plans... This is a long, LONG story but i’ll just try to keep to the essential points as i don’t want to bore you all to death!! But basically, I was diagnosed with MS in May, but told I would need a lumbar puncture to determine which type of MS I have. I had no symptoms other than fatigue at the time (my more serious symptoms had gone of their own accord) but was put on a very potent course of steroids for 5 days and told that i’d be seen again in 2 months after my LP. After 4 months of absolutely appalling treatment (as in - total lack of treatment, being forgotten about, slipping through the admin net on two occasions and no results) my GP got fed up and referred me to the National hospital for neurology and neurosurgery in London. I saw a consultant there last week, who had all of my results, and who told me that I have incredibly aggressive MS - she can’t tell if it’s RRMS or on the cusp of being PPMS (I’ve had loads of on/off symptoms since 13 years old, most have come and gone completely, but there are a couple which have never gone and slowly gotten worse)... but she told me I have several new and enhancing lesions visible in the May MRIs which I didn’t have when I had an mri in March .... and that a lot of my lesions are clustered around my cervical spine. She said this usually goes hand-in-hand with disability... and she said she’s very surprised to see I have no disability at the moment. So, she said we need to start treatment immediately. (She also happened to tell me that she has no idea why I was sent for the LP or why I was given the steroids, as my MRI’s were crystal clear back in May and should have been more than enough for me to have been started immediately on a DMT...... so now I’m going down that rabbit warren of writing a formal complaint because I am beyond furious with my previous consultant and clinic). So now we are where we are - I’ve been offered two medications to choose from. Both of which, my new consultant tells me, will greatly increase my risk of cancer. But she justified this by saying “disability is almost a certainty without treatment .... whilst cancer is only a possibility.” BUT ... my main concern is that, I’m 28 with symptoms starting 15 years ago... and despite having lesions in my cervical spine and an apparently aggressive form of MS, I am largely “okay” at the moment. I feel like my poor body has been doing an incredible job at managing this... and I haven’t exactly helped it because I wasn’t aware! I have a very high-stress lifestyle and my sleep pattern is atrocious, plus I’m an absolute hermit and never go outside so I’ve probably been Vit D deficient for a while.. so, if I was to sort my lifestyle out, and tick all the health and nutrition boxes, could this be enough??? I know a lot of people say that lifestyle changes do not stop the disease, but, I’ve read a lot of contradicting information. I am beyond confused and I just don’t know what to do. What if my body just needs a bit of extra help? I don’t care how restrictive/strict I need to be - I’m the kind of person who can easily cut things out/make changes if I know I need to. But what if I rely on just lifestyle changes, then end up disabled in a month or two? Or what if I take the medication and end up dead in 6 months with stage 4 cancer? What if I take the medication and end up disabled anyway? What if I take the medication when lifestyle changes would have been enough? Do I take that chance or am I doing myself a massive disservice by not giving my body the chance to heal if I help it? My consultant has got the ball rolling but I won’t be seeing her again until December, and when I see her next is when we’re going to start treatment. But, logistically, if I do decide to try and tackle this with lifestyle, how long do I allow? Can I really go back to my consultant in December and say “thanks for all your hard work but after all that I’m not going to take the treatment” .... I just have no idea what to do. I know it’s the nature of this beast ... the unpredictability... but I just wondered if anyone here has any experience or following a serious lifestyle overhaul, and whether it made any difference? .... thanks in advance and sorry for waffling! Danielle x
@NEWMANSHARON962GMAILCOM

I have been on ms meds for 20 yrs.This is a progressive disease.I would take the meds definitely.Your quality of life matters.Look up the Swank diet while you are at it.Some people say it helps !

@StrictlySoca

These thoughts might seem very reasonable in response to a worrying time but it seems to me you are only considering your situation as an either/or choice. The recent studies - check out the Barts MS blog - show that early treatment with an effective DMT (the ones that slight increase cancer risk) combined with both exercise and diet lead to the least disability. You could get cancer but then again you could have already got the start of heart disease or any other number of conditions. The future is uncertain but the present is here. Right now you have MS. I assume you would treat cancer so why not treat MS? You don’t have unlimited neural reserve so although you are Ok now when it’s gone then you will have more disabling symptoms. I take the most effective DMT that the neurologist will prescribe and argue like crazy for the highly effective treatments. I also exercise, meditate and follow the Wahls protocol diet. I do lots of things while I can. I probably will be more disabled than later but I do everything to slow the process of MS