Hi everyone. For the past 12 years I’ve suffered with every symptom you can list, I’ve had 4 mri’s and 1 dat scan and I’ve been told they’re all ‘normal’. When the first neurologist told me my tremor was essential my doc (who is unreal) told me that he truly believed I would be diagnosed with something a bit further down the line and that I was just a bit too young. (I was 33 then and now I’m 45) so recently my symptoms have been getting worse, right hand tremor is so bad I have to eat and drink with my left, although that’s not much better. My legs feel like they’re being squeezed from the inside out 24 hours a day and I can’t talk in sentences without forgetting at least what I was talking about or how to say the words. My latest symptom is my tongue and jaw going numb, like spasms. This first happened when I was in a counselling session and she wanted to ring an ambulance lol. I seen my doc again today who did a full hour of questioning and testing. He’s now written a referral to my previous neurologist but I’m also lucky enough to have private healthcare so we’ll see which appt comes first.
So here I am in limbo again, the thoughts of running for all these appointments and tests again for them to just look at the wall as they say “everything’s normal” is making me not even want to follow up lol.
Any hints or tips on explaining my symptoms to the Neuro so that he’ll not just pass them over??
Thanks in advance, hope you’re all well x
Keep them concise. List them in date order, and how long they persisted, and if they resolved, or partly resolved. They probably won’t be interested in fleeting sensations, just things that have persisted for a while, and those that have had an impact on your day to day living.
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Thankyou x
Hi there! I know just how frustrating it is to be told ‘everything’s normal’, when your body is telling you different.
It took 22 years to diagnose PPMS, after thoracic and cervical MS lesions took some spotting.
Write down every symptom with dates and take someone with you, who knows you well…who could be your voice when actual words fail you.
Wishing you all the best
Boudsxx
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