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.
Thanks in advance for replies