I have been experiencing symptoms on and of since my late 20s (I’m 61 now) but they always settled and were put down to other conditions by doctors. Last summer after experiencing severe vertigo and nausea and extreme weight loss my GP sent me to ENT who requested an MRI. A second MRI was done after the radiographer picked up brain lesions and after this I was referred urgently to neurology. Like lots of other people, I had to wait to see someone, although my GP managed to shortcircuit this by sending me to A&E last March to rule out a stroke. I finally saw a neurologist in June and he mentioned MS several times during the consultation but then downgraded it to possible neuro inflammatory condition in his letter. I have subsequently had a battery of blood tests and a lumbar puncture and am now waiting for my next appointment to find out the results.
The whole process has left me feeling very uncertain and scared. I now have consistent symptoms (all of which I’ve had before) but which are showing no sign of easing. I don’t know how much the stress of the last year has affected this. Fortunately I have a very supportive husband and an equally supportive boss so I guess I feel quite blessed.
How do I deal with this “almost diagnosis”? Is it normal to have this to-and-fro in the diagnosis process? The neurologist’s wording in the letter suggested that he was considering progressive MS but I am finding the not knowing really hard to deal with. Also there isn’t an MS specialist anywhere near where I live - the neurologist I saw specialises in epilepsy. My GP has referred me urgently to Queen’s Square but that was in March and there is no sign of an appointment.
Has anybody else had this kind of experience whilst waiting for diagnosis? How important is it to be seen by an MS specialist?
It sounds like you’ve been through a really difficult and exhausting period, especially after having symptoms for so many years and then suddenly being faced with scans, tests, and the possibility of MS. The uncertainty while waiting for answers can sometimes feel harder than having a diagnosis itself.
From what you’ve described, it’s understandable that you’re feeling scared and frustrated. The diagnostic process can involve a lot of investigation, and sometimes doctors need time to rule out other conditions before they can be confident about what is causing the symptoms. The wording in a letter can also be difficult to interpret without having the full clinical context.
It’s really positive that you have a supportive husband and understanding employer around you. Having people who believe you and give you space to talk can make such a difference during a period like this.
While you’re waiting for your next appointment, it might help to write down your symptoms, when they occur, and any changes you’ve noticed. You could also take a list of questions to your appointment, including whether an MS specialist assessment would be appropriate and what the test results mean for the next steps.
I hope you get some clearer answers soon. The waiting and uncertainty are genuinely difficult, so you’re definitely not alone in finding this stage overwhelming.
If you’re interested in practical support around mobility and maintaining independence, Serene Soul Care also provides Mobility Support.