awaiting diagnosis
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No one truly knows how awful a journey it is due to the nature of how it affects each of us differently. Between our lives and that of our family we all have it has been tough on them just as much. You need to have sometime for your headspace to process the illness, how its effecting you personally and that of those around us the most.
Do keep a diary or journal and this keeps you grounded is a good thing to do. Even just a few words how your feeling or if you notice new or worsening symptoms. I honestly could not describe what a relapse is to anyone, even though I’ve likely had disease 26 years now. That has got to be the worst thing to figure out what is a relapse or worsening symptom.
To anyone wanting to read this bit please do a SAR of your own medical records to see just exactly what they have written could be delaying many out there from getting diagnosis of MS. My own was likely damaged f by the words (Functional Disorder) FD or (Functional Neurological Disorder) FND on record by a different profession. The neurologist took to heart when reading my file in applying the logic of another that two subsequent neurologists kept misdiagnosing or missing the signs. Until my brain imploded from damage after damage year on year running unchecked to wreck the neuroplasticity of the brain is why getting illness confirmed quickly is required to preserve this part of science.
Not a single person had any clue to what they were doing is my own issue, that people need to be aware. Never go to any neurology appointment alone as they are very skilled at making you believe what they want is the right outcome for you, when it can be deadly damaging. Once that door closes it is hard for a GP to get you seen by them again. because admitting they got it wrong first time means they messed up your care. IT seems to be a rcuurrent problem in the forums pages of this being missed or that not described how they want it to sound. Saying the wrong word to describe your issues, can destroy your diagnosis in a heart beat, I kid you not!
So please write down what you want to ask, you do the leading in these sessions when you get the chance, or take a friend who will fight for you in your corner to be heard.
Never let a neurologist lead you down a pathway to migraines or other garbage if they don’t have any proof of these conditions. MS is such a seriously hard illness to describe I truly am surprised how many of us actually are diagnosed over years of clear neurological problems they don’t want to admit to.
Expensive testing caused delays in diagnosis of a horrendous body destroying disease and destroys lives, careers and family’s with it if not got early enough!
It truly is so damaging what it can do, and those you love feel that pain too is hardest of all to come to terms with.
Take one day at a time and live it to the fullest and keep active if you can, keeping your strength keeps it at bay longer no doubt in that.
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