I’m not on Tysabri and probably won’t ever qualify, thank goodness. I think it’s an excellent drug, but I’m glad that the MS isn’t aggressive enough to need it.
However, “Come on?” How on earth is a neurologist who is treating MS, Alzheimers, Parkinson’s, epilepsy, dementia, brain tumours, migraines, going to take the time to give someone advice on diet? Most can’t agree on diet in the first place and anyone who has studied the various dietary approaches, knows that they can take quite opposing views - Paleo versus Swank for example.
Diet and stress control is up to us. We are the patients and we should know our own bodies, but then, we don’t find out what works for us or not until we try.
I can’t eat gluten. I can’t eat oats and I can’t eat pulses and it took years for me to realise that this was the way to find a better quality of life. This doesn’t chime well with the Swank diet and yet, people do well on it. I’d be in agony within a week. Diet is very, very complicated.
Diet changed my MS. I was very ill and unable to walk more than a few metres and so I got sick and tired of being sick and tired. I went a bit over the top and spent 5 months eating a raw food diet. It did the trick, but I wasn’t happy on it. In fact, it took me about 2 years to be able to eat salad again. However, I felt great. My neuro was amazed, but quite pleased as he was about to prescribe Modafinal and was very relieved that he wouldn’t have to apply for funding.
I wasn’t going to stop taking beta-interferon though. No way. It had worked really well since 2000 and still does. My last relapse was when I had run out of it, after moving to Spain. I’m back on it now and it’s been 3 relapse-free years. That’s years where I can exercise and get on with life, instead of being constantly ill.
MS is complicated to treat and most people don’t know how to find out if a diet will help their symptoms or not. I know because I’d had loads of blood tests when I lived in Asia.
As for neuros getting perks or upgrades to conferences. Well, I know our neuro works really hard. He’d be delighted to get an upgrade and he’d damn well deserve it. He diagnosed my husband with a rare type of migraine, after weeks of research and the treatment is a dead cheap calcium channel blocker. This was 8 years after many misdiagnoses - depression, anxiety, delusions, TIAs, and his life is great now. This from the only neuro in the hospital and he does a great job.
We are just patients and cases. That’s the way that medicine works. So what? If we receive decent clinical treatment from our doctors, then this is great.
Life is complicated. Nothing is black or white and MS is really complicated. What works for one person, won’t for another and then there’s all the progressive forms that don’t respond to drug therapies.
Your views on pharmaceutical connections would be acceptable if you were writing from the US. Medicine for profit is quite different and yes, neuros in the US do receive kickbacks for prescribing certain drugs, but in the UK and other European countries with socialised/universal healthcare, this is rarely true.
You wrote that your specialist is treating your MRI, not you. Well, you may be amazed to learn that in the UK, you’ll probably get one MRI for diagnosis and no more - ever. If you are on a drug trial or Tysabri, then there’ll be more MRIs, but most people only ever get one MRI.
Why do you expect your Neurologist to become your one-stop therapist? It’s not possible and unfair to expect yours to be a doctor, nutritionist and physiotherapist/trainer. People only get one appointment per year. I’d love to know how you think that this can work - especially as that appointment lasts about 20 to 30 minutes.
In the UK, back when I was diagnosed, you’d see a neurologist who’d say, ‘yes, I know there are some drugs to slow down the relapse rate, but they cost too much and the government won’t let us prescribe them.’ People with MS were just ignored. Now, that’s an outrage and thank goodness things have changed.
) I just dont like the effect they have on my body and mind, I have no tolerance for them.