I desperately need medical help and investigating…again, but I’m scared of being fobbed off with some kind of functional diagnosis.
Over the past 20 years ish I’ve had random episodes of numbness in my leg, loss of continence, diagnosed with trigeminal neuralgia etc. I remember getting very scared after an episode of hand tremor too. I paid to see a private neurologist and had a brain MRI around my TN diagnosis too (idiopathic but confirmed and treated with carbamazepine). 4 months ago the right side of my mouth dropped and they said it was a hemiplegic migraine (no headache symptoms) and I was put on beta blockers. The past couple of months I’m experiencing debilitating fatigue, vacant episodes, lots and lots of balance issues, and my right hand has pins and needles and is cold to touch. I had bloods which didn’t show much except high cholesterol. I can’t seek help and be lumped with something it’s not or disregarded. I’m 42, just don’t know where to go with this. I know something is wrong and worsening now.
That all sounds very distressing for you and I’m sorry.
Your concern about being fobbed off is very understandable: it’s been a long time and you don’t know what the matter is yet. But really, doggedly pursuing a diagnosis is the only show in town, so I think you need to do your best to brace yourself and press on.
There’s something amiss. And it’s true there’s a possibility that you’ll never find out what. But it’s equally possible that you will. Might as well try. Good luck.
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Did the MRI show anything at all?
No, just congested sinus cavities but I don’t have any sinusitis symptoms so I didn’t pursue that