@Kemofin

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Kemofin

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.

barryb

@barryb

@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!

Sewing-chick

@Sewing-chick

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.

barryb

@barryb

@kemofin I agree 100% with @sewing-chick, by all means try it but it is not a magic bullet, I ate pretty clean beforehand, maybe it does work for some especially those with extremely bad diets, but I would hazzard it doesnt for the majority. As sewing-chick mentioned you don't hear from the masses of failures...

Kemofin

@Kemofin

The problem is...no one really knows for sure. Some DMT's, have no effect on certain people and success on others. As I have read everywhere, the cause for the onset of MS is not known, but believed to be triggered by environmental interactions.... Perhaps for some, those environmental triggers are harboured in the diet and the removal of these, be it saturated fat or dairy, or gluten, is that little thing that tempers the relapses to at worst infrequent, or as for chick, brought no benefits. For you chick, you followed to no avail... Part of the OMS seems to be the whole vit d thing which is proven to be deficient in people with MS with relapses reduced when it is higher. That along with the occurrences around the equator being negligible where sun light is in abundance should not be ignored. Irrespective of diet people should be encouraged to elevate their vit d levels.

potter

@potter

When I was diagnosed with MS I got on a DMD as soon as possible. I had two aunts with MS before they had any DMD's and they were both on the Swank diet. One aunt went down hill fast and had to go to assisted living by the time she was 30. The other aunt case was less severe, she only had trouble walking. I think a good diet and a DMD is the way to go, I am on my third year of Tecfidera, no relapses or problems taking the drug anymore. Potter

Avengr13

@Avengr13

I found from my experience, is [email protected] Potter is right on the money. I think both are important. I would cover all my bases including excercise to the best of your ability. Good luck! ?

question1333

@question1333

kemofin, Hi there... I haven't used the site for a little while now, so the best help I can offer you right now is a big E-HUG ! :-) I hope that helps a little? Take care, Luv & stuff, question1333

Kemofin

@Kemofin

I didn't say that they do not work, but for some they are not so effective as for others. It isn't a case of one or the other, obviously you would do whatever you can to help. But because the lifestyle trials are not subjected to the modern RCT method of study criteria, it doesn't mean there is no benefit. The drugs that the pharma's would like to be taken as the new frontline treatment are subjected to very large RCT's as you point out.... This can help present the results more favourably than if they were smaller with less participants. There is study behind the diets and lifestyle, as aforementioned with the vit d and the intake of omega 3 all strongly pointing to reducing relapses. I didn't think the swank study although not following the modern clinical acceptance of RCT's was poorly collected data... I assume you have read the various papers as I would assume all with ms have. To dismiss it would be beyond arrogant.