Just diagnosed with minor MS

I was feeling fragile and upset enough and this hasn’t helped.

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Aww bless you xxxx If it makes any difference I’ve just read back through the posts and I really don’t think Karen mean’t it to be taken that way xxxx when I read it first time it didn’t strike me that way so that’s why I just read it again to be sure xx

I think we are all very sensitive & vulnerable and it’s easy to take things the wrong way x everybodys input is extremely valuable when we are trying to figure things out x I personally would be happy to put up information like you did - and just as happy for someone who has researched it to question it & prove it wrong x

Please don’t feel that that was a slight on you - that’s a horrible feeling to have when you are already feeling low and upset - especially when it’s not warranted ((((hugs)))) xxjenxxx

I confess: I was angry and didn’t phrase my response as “nicely” as I could have. I’d just read your post about 1.5T vs 3T MRI and had decided not to reply to it, then I read your first reply about D3 and decided not to reply to it, but then I saw the study you had posted. The three combined, which as you can see I do not wholly agree with, upset me and I wrote my replies in that mood.

I do value other experiences, knowledge and information (it’s one of the ways that I continue to learn about MS), but effectively telling people that 400iu D3 a day is enough and that, look, this study shows that D3 does nothing for MS, is misleading and I didn’t like that. I’m passionate about science and evidence based medicine; deviations from that upset me more than most! On top of that, and this is actually pretty sad(!), I am also very protective of the people on this forum.

I’m sorry if you were upset by my replies and I apologise for any unpleasant tone in them. I stand by the content though.

Well, I suppose I could say the same thing - your tone in the past couple of replies has not been pleasant to me at all; it is also based on misinterpretation. I was annoyed with some of the information in the posts. I did not respond personally. I responded to the content. At no time did I accuse you of “pushing” or “preaching” or anything like that. The problem with text - it is open to an interpretation that the author did not intend. I have apologised for (unintentionally!) upsetting you. What more am I supposed to do?

Whether or not you choose to stay on the forum is entirely your choice. There is no way to close your account that I know of - after all, I don’t work for the MSS. I hope you don’t leave though. I would not want to be responsible (albeit unwittingly) for anyone leaving and there is a lot of support on this forum that can’t be found elsewhere which, I hope, you would benefit from.

At this precise moment, I am also upset and wondering why I bother. I take it too personally. I care too much. Maybe I shouldn’t. Am I supposed to take other people’s points and accusations on the chin regardless of what is said? Am I not supposed to challenge anything? I know I could be more diplomatic sometimes. But am I supposed to anticipate reactions to things that weren’t intended or were misinterpreted? I’m waffling now, and it’s not helpful. But this thing has made me realise that helping on this forum has become too big a part of my life. Time for a break. I’m not leaving for good, and you shouldn’t take this personally either muppetnumberone. This is also absolutely not a call for anyone on here to do a “please don’t go” reply. Apart from anything, I won’t see it!

Maybe see you all again in a few weeks…

Karen x

PS There are plenty of other experienced MSers who can reply to posts on here. If anyone doesn’t get what they need, try posting on Everyday Living.

The thing is, muppetnumberone, there have been several people over the last few years who have posted a reference to just one single research paper. Quite often, it happens to be an out-of-date paper, or one that just happens to be a poor piece of research.

There are also several of us who happen to have been trained in good research practice, and taught how to read research papers, and we are quite likely to comment if we see something mentioned which is of questionable scientific value. This happens most often when someone espouses a particular treatment, or theory, and then proclaims that this is (typically):

  • The ONLY cure for MS. (I wish)
    or
  • The cause of MS. (Funny how the cause is always something different)
    and then gets all huffy when one or all of us point out the flaws in the base research.

It is not personal. It is directed at the research, and not at the person who posted the reference.

Geoff

If you were referring to my post above of the 9th April (at 5.58 pm), then I cannot see anywhere that suggests that you have been misinterpreted. I certainly did not suggest that you - or any other named person - had claimed to have found the cause of MS, and I think that you should retract that statement

Well, yes and no. If you look at the way that advice, guidance, etc, gets handed down, it can be a little chaotic. Without considering a vast amount of research evidence, NICE will not approve any medication being prescribed for a specified condition (just consider the time-lag between Gilenya getting its licence, and getting NICE approval).You can find situations where a licenced drug can be prescribed “off ticket” (i.e. not on the NHS) as is the case with LDN

The standard reference for prescribers is the British National Formulary (or BNF). this is a joint product of the BMA and the Royal Pharmaceutical Society of Great Britain. They make it clear that the 400iu dose is regarded as a maintenance dose, and cite conditions where doses of 40,000 or 100,000 iu daily can be needed. You might like to note that back in 2007, the American Journal of Clinical Nutrition suggested that a safe daily dose was 10,000 iu. Given that the research on large doses of D3 for MS patients has only been emerging for the last few years, I would expect it will be some years more before NICE (certainly) or the BNF (possibly) actually approve of large doses. This is one reason why quoting one single paper out of context can be misleading.

Geoff

of course, Louise, this is not quite the way it came across.

So what did it look like?
You made a statement that the reference was interesting.
Not to you personally, but as a general statement.

Then you asked if a site was trustworthy (having already said that you did not know if it was reliable) and gave a complete URL that linked not just to the MS Resource Centre, but to a specific paper. Yes, I know that the page has a lot more material on it, but for most people, it will look like you have made a statement that that looked like it was being applied to the first paper mentioned.

So, you asked two distinct questions. Karen answered both of them.
Yes, the site is reliable.No that leading paper is not.

I would ask if you had read the whole paper. Have you?
I can read it for a small fee UD$32 for 24 hours access. Karen still being University staff can access it throught her Library.
I can only judge the paper on what is in the abstract - and on the information available there, it is very obvious that it was not a well designed or executed study. Karen covered it in a little more detail.

So, you see, this all starts with your categorical statement.

Now, you may not know this, but Karen has probably got more “hands-on” time with MRI scanners than any three or four neuros picked at random. If you have contributed to her leaving this forum, then you have not done anyone any favours.

Geoff