How do you deal with the ‘limbo period’?

[ElM90]

Hello! First time poster :)

Journey probably began around a year ago - went to dr complaining of extreme fatigue and just a general feeling of unwellness, ran bloods and dx’d with iron deficiency anaemia and low bit D so given iron tablets and told to be on my merry way.

Beginning of September, standing fully clothed at a very hot swimming pool, and the right hand side of my nose started to tingle, as if a hair was caught up there, and over the hour had spread to the right side of my face. Advised to go to hospital, was discharged the next morning when they’d ruled out stroke. By the next day my right arm and leg were also tingling/buzzing and it hasn’t stopped since. I’m exhausted, I need to urinate constantly, have spots in vision mostly when showering, blurred vision in left eye, lower back pain when sitting down for too long, muscle twitches in calves, shooting pains in limbs. Referred to neuro who has suggested demyelination as a differential diagnosis but is ‘keeping an open mind at this stage’. Bloods all normal excepting low vit D, neuro exam normal by all accounts except diminished sensation in some areas of RHS. Had 1x brain MRI with no contrast and a VER test, no results back yet. I have Raynaud’s syndrome but I’ve never been unwell before that I can pinpoint.

I see the majority of the community have have wide ranging symptoms, ongoing dr visits/tests and just general understandable uncertainty about what’s going on with their body. I do too, and it’s driving me a bit mad. Not usually one to try and diagnose myself via the internet but I feel like I’ve been doing that a lot lately to try and get as informed as possible so I don’t get caught out but there has to be a point where that becomes unhealthy.

How do you cope mentally with the limbo period between symptoms and diagnosis? I need some inspiration!

Thanks :)

[supermum_ms]

Hi and welcome,

I genuinely believe researching symptoms or the medical conditions those symptoms are associated with can be very beneficial if it helps you make sense of the unknown but it can also cause unnecessary fears too. I think whether or not it's a good idea really depends on how you process potentially confronting medical information, and if by doing it it helps or hinders you....

MS is a condition that has so many symptoms that's been associated with it because it's a central nervous system condition, that more often than not, people are diagnosed with something else and too many end up worrying over a medical condition they don't actually have, which can trigger or exacerbate preexisting anxiety and depression issues.  

My advice for anyone in diagnostic limbo is to keep a very open mind on what it could be, don't hyper focus on anything specific and always, always protect your mental health!

Hope that helps.......JJ