Neuro appointment
So….
I saw the neuro and have just received ‘the letter’.
It says… “Possible sensory cervical transverse myelitis? …demyelination. I am awaiting an appointment for MRI’s on brain and c spine. Most of the tests he carried out seemed to not turn up any negative results. It says that the lower limb examination showed hyperreflexia with crossed abductors.
Most tingling has gone, but still left with pain in the left leg, which seems to be present in the right aswell.
Have got a policy that covers the MRI’s so don’t have to wait 2 months and will be in within a couple of weeks. The more I read, I have the fear that it will be ppms, though the suspected mild episodes over recent years would suggest otherwise?…. I’ll no doubt find out in due course!
Would a relapse typical of rrms, leave lingering pain in the legs and the sporadic little prickly feelings seemingly anywhere.
I have researched extensively over the past weeks and there seems to be many papers with encouraging study outcomes supporting the work of swank and subsequent work of jelinek. Everyone knows that the old adage ‘ you are what you eat’ has significant implications in many chronic illnesses…. But despite the evidence, their seems to be some reticence from the ‘medicine men’ to promote this. I suspect negativity from some on many forums are from those who do not have the discipline to make such lifestyle changes, perhaps convincing themselves that it is no more than quackery and therefore can justify their decision to not try and help themselves. I’ve never given much thought to the holistic approach to treatment of ailments but am convinced enough to give it a go…. Here comes healthy living and perhaps it will encourage that nudge of my immune system to be slightly less aggressive, or even better, climb back out of where it shouldn’t be.
Hopeful on my next update.
@kemofin I am not sure but I think PPMS could lead to extremely quick deteration, you seem to be pretty stable with episodes so "sounds like" RRMS maybe SPMS with relapses. When you have a relapse, you may be left with symptoms, they may or may not recover over time so the sooner you get on a DMD the better to reduce the chances of a relapse. All forms of MS has underlying continual deteriation, it may affect some more than others. I eat pretty clean though I fell of the wagon the past 6 months but followed one of the diets for a year (swank one I think it was) made no difference to me except I lost weight and at 5'10" and already weighing in at under 11 stone, now hovering around 10stone 3 I do not need to lose any! Though I have been off that fiest for almost 2 years my weight basically staid at that level. Eat healthy, avoid gluten where you can and cut back on processed foods where possible, would be my suggestion, don't deny yourself anything if you fancy it!
I followed the 'best odds diet' for four years. That's no dairy, gluten, pulses, sugar or beer. I got considerably worse over the time I was on the diet and my rate of deterioration got faster. I stopped the diet when I had too much trouble cooking (because of weakness in my hands) to be able to follow it any more. I did try the Wahls protocol for about 5 or 6 weeks later. It gave me terribly acidic were - like having a UTI but no bacteria to be found. Once I stopped the Wahls protocol, I was fine again. Anyway, my point is that I followed the best odds diet religiously for years. I did have the discipline to do it, because I believed it might help me, I never saw any evidence that it did. I think lots of people DON'T share their experiences of these unhelpful diets because they are embarrassed that they were stupid enough to try them. My advice to you is to get on Cladribine - I wish someone had told me to do this in those years of difficult, inconvenient and ineffective following of a diet.