Support for those in Limbo….

It seems to me that there is a great deal of fantastic support available for those who have received a diagnosis, whether MS or any other ailment.

I am wondering if there are any support groups or organisations specifically geared toward helping those with undiagnosed conditions, particularly with symptoms affecting them on a day to day basis that face employment or life changes?

I feel a little uncomfortable both with seeking help on this forum or directly via The MS Society given that I currently have no label for my symptoms, hence feel a bit of a fraud even being here. Although my symptoms, presentation and current medication may be similar, I realise I may not have MS at all given all of the mimics. I suspect that many in ‘limbo’ will be able to identify with this.

Even the professionals dealing with my care seems to be finding the lack of diagnosis an issue. During initial assessment for physiotherapy, I was advised that it is difficult to treat me without a diagnosis given that ‘exercises’ could do more harm than good (although frustrating, I appreciate the stance)….

It is so darn soul-destroying being ‘left out in the cold’ with real symptoms, yet being expected to carry on as normal given that there is no official ‘label’, hence verification of ‘illness’ in the eyes of many.

……and breath

Thanks in advance for replies

I don’t know of any support groups for limbolanders, but everyone is welcome on here

Karen x

Thanks so much Karen! That’s good to know

This forum alone must keep you busy and out of trouble. You are amazing - don’t know how you manage to reply to each and every post.

You are truly a candidate worthy of mention in New Year’s Honours

LOL! Nope, nothing special. Just an old hand with too much time on her hands


Hi again everyone,

Thanks so much for your replies. It is a great comfort to know that there are others out there who are willing to share their stories and offer support from a perspective that I can identify with. Thanks also to The MS Society for allowing those without a diagnosis to liaise via this forum.

Sorry to hear of your plight Emma - sounds like you are having a really rough time. Hoping that the return of your partner over Christmas will bring some comfort and much needed support. Good luck. PM sent

Wow - what a positive post Bookworm! I too have seen many references about the benefits of cutting out meat and dairy. Gotta be worth a try provided there are no adverse effects or deficiencies (I don’t know enough about this to praise or condone at this stage). Have you seen ‘The Food Hospital’? Although not really relevant to MS as yet, some of the results are surprising (worth noting however that diets are compiled on a case by case basis by health professionals).

I remember reading long ago that blood type can be a significant factor in determining what someone should and should not be eating? In my case, a vegetarian diet was suggested as appropriate (I’m type A). I would assume that there are many things that need to be considered before radically changing ones diet.

I think you have hit the nail on the head. Besides the daily menace of symptoms, for me, the two most annoying aspects are lack of control and lack of diagnosis. The latter of course causes so many issues for those who are absent from work insofar as justifying said absence and despite provision of relevant certification from the GP. I get the impression that many others on this forum, like me are quite conscientious by nature.

Take Care