Distressed by some posts in this forum tonight: please read

New diagnosis and before diagnosis
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Just wanted to say that although I have found this forum to be a huge source of support, I have also recently been getting very upset by the tone of some of the posts, and so i think I am going to take a break for a while.

i have been having ongoing assessments over past year, and, during the whole process I have tried to be as open-minded as possible about what (or if!) i would be diagnosed with. Although I strongly suspect MS, I have also tried to be mindful of the fact that not everybody with these sorts of symptoms has MS; and that is why the assessments are necessary. So I am trying to not jump the gun, and to be as patient as possible with it all (which, as we all know, is sometimes really hard).

I am finding this more and more difficult in the light of some recent posts.

There have been a number of posts being very critical of diagnoses of conditions such as CFS / ME / FND.

Today, there was a thread in which someone said they had had their first neuro appointment, and that they thought it went really well; the neuro had taken their time, not rushed them, done physical tests, ordered MRI, been very personable and helpful, and had said although they were screening for MS they were also considering / leaning towards diagnosis of FND, and given the person details of relevant information sources about the condition. The person said in their post that they felt the appointment had gone well, and made it clear they were happy with their treatment.

The response to this? A post from someone saying “another pointless diagnosis then? what use is a diagnosis of FND? Judgemental neuro, they derserve shooting”

Now, whilst I fully understand that some neuros can be less than professional, and some can reta patients in a disrespectful, belittling manner, it doesnt sound as if this was the case here. And more importantly, the person themselves actually felt the appointment had gone well… so why are other people then jumping in and criticising a neuro who has actually behaved in a professional, couretous, and helpful way?

This is not the first time this sort of post has occured. There have been quite a few posts where people are getting very angry at being told by specialists their condition is not MS. Unfortunately, at times on this forum I get the distinct impression that their are some people who absolutely refuse to acknowledge the possibility that a diagnosis other than MS might be possible. Which, of course, is complete nonsense. Not everyone on this forum has MS. Some of us may get diagnosed with CFS/ ME /FND./ other conditions. It is completely unhelpful to be so negative about the possibilty that this might be the case. It is particularly unhelpful to people who are being diagnosed with FND / CFS etc to have people on here saying “ignore what the specialists tell you, don’t settle for anything other than MS diagnosis”. I know that sometimes mis-diagnoses can happen, but other times, it is important that people accept whatever condition they have, whether that is MS / CFS / ME /FND, whatever…

Sorry for the rant, but this has really really upset me tonight.

I am going to take a break from the forum for a while, but wanted to express my feelings before I go.

And also to wish everyone well, and say that most of the posts here have actually helped me immensely, but in order to regain some sense of calm and open-mindedness about the tests / assessments I am undergoing, I think I need to stay away from this forum and the sort of posts I have mentioned above.

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Enjoy your break anon, hope you come back at some point in the future.

Take care, Love and Light Noreen

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A couple of points on this: 1) People bring their own experiences to the Forum, along with their hopes, fears and frustrations. No one responds like a totally objective and ice-cool Mr Spock. Sometimes this passion and personal involvement enriches the discourse. Sometimes it means that the response says more about the responder than it does about the original poster’s question. That is OK, usually. Occasionally, people overstep what is OK. That’s when the Ts&Cs and the vigilence of the volunteer moderators come into play. It is not often necessary. 2) People often take their cue from the original poster and they try to help. Sometimes they get it right and sometimes they don’t. But mostly people are trying to be kind. Again, their definition of the right thing sometimes casts more light on the responder’s state of mind, or what bees she or he has in his or her bonnet than about anything else. Mostly, people are just doing their best. Please stick around. If you feel the need to edge things in the right direction when they are getting unbalanced, it is easier to do that from inside the tent than from outside. Alison

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Thanks Alison,

You are absolutely right of course that most people are trying to be kind, and that this forum is usually a wonderfully supportive place. And I completely understand that given the reasons for people being on this forum in the first place, a person’s response might not be ‘ice cool like mr spock’, and that sometimes a response says more about their own problems than it does about the post they are commenting on. For me, this is certainly a 'bee in my bonnet ’ that I’ve had for a while, and so I really wanted to express it before I leave.

We are all very aware that oftentimes people with MS can get brushed aside by doctors at times, maybe our difficulties might not be fully recognised / investigated etc, which can slow down the process, make it more difficult emotionally etc. And also, we all know that mis-diagnoses do happen… that sometimes some people get diagnosed with ME / CFS, or others, and then years later it transpires they actually had MS. But I think sometimes this can whip people up into a bit of a frenzy wherein people become so suspicious / paranoid about the possibility of being misdiagnosed, that it can come across as an absolute refusal to accept (for self or others) that any diagnosis other than MS is appropriate.

I think this is a real issue in some areas of this forum and one that people do need to recognise.

If a person has recently been diagnosed with, for example, ME, and the responses on here are ‘ignore that, its a wasteground diagnisis’ (a response I have seen on several occasions), or ‘ME is almost identical to MS but doctors won’t admit it’ or ‘keep on pushing until you get a daignosis you are happy with’ (clearly well-intentioned, but sometimes just not good advice!), then this can actually make it harder for the person concerned to accept / come to terms with their diagnosis.

But you are absolutely right - everyone has their own ‘bee in their bonet’ - and at the moment, this is mine - which is why I need to stay away for a while - and is also why I wnated to bring it up as a thread - not because I want to start an argument / become contentious - but because I definitely think it is a real issue on the forum that moment

Will probably be back after a bit of a hiatus - and I am hoping that in the meantime, all goes well for everybody on here x

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Take care and a very brave piece by all.

xx