I'm feeling terrible at the moment and I'm beginning to feel like I'm going nuts!
I ended up in hospital 6wks ago with what appeared to be a stroke, but it wasn't. Since then I've spent 4/6 weeks in hospital being poked, prodded, scanned and tested for all sorts. These 'episodes' are now happening daily and getting worse each time and are now accompanied by severe burning headaches.
Initially, the Neurologist thought it was hemiplegic migraine, but then as symptoms were progressing, he decided that my symptoms were functional (the irony of it, nothing functional about me at the moment at all!).
However, after a trip to my own doctor today, he wants to put me on medication for Hemiplegic Migraine as he pointed out that my MRI showed there was a problem, therefore it can't be functional?
I'm going to give a bit of background info and if anyone could identify any of the symptoms below, please let me know before I go taking drugs for hemiplegic migraine that may or may not help.
Hemifacial spasm - right side
Asphasia - coudn't find words to answer questions
Tongue twitching on left and floppy on right side
Soft palate dropped on right side, no feeling in soft palate, no gag reflex
Right arm weakness
No reflexes down right side and slow relexes on left side
MRI showed a lot of white matter ischemia in both lobes - unknown cause, but not likely to be demyalation.
After the first attack, the symptoms resolved themselves 4 days later in hospital(except for reflexes and tongue twitching) when I had electric shock type headache, but symptoms returned again the following day, but they're staying for shorter periods now(a couple of hours at a time) and the attacks are happening many many times per day (I've lost count some days).
5 days after I was released from hospital, I had a major attack. My partner drove me to the emergency room and they transferred me by ambulance to a hospital that specialize in stroke as I had lost power down my right side completely along with all of the symptoms above. Again, I had a CT scan which showed there was no stroke, symptoms resolved after a couple of days, again followed by shorter attacks. But MRI again revealed white matter ischemia. I got out of hospital after 3 weeks with a diagnosis of functional neurological disorder.
Since then it has progressed further to involving both sides of my face. My left eyebrow now pulls down along with the right side of my mouth. My neck stiffens and I get a burning sensation at the base of my skull and little electric shocks in my head. When this happens, I sometimes get weakness and tremor in both arms and weakness in my right leg. I now have no feeling in both sides of soft palate and tongue weakness/twitching on both sides (at rest and protruded).
Another strange development is that I've discovered two swollen lumps at the base of my skull, one on each side of my head. If I press on the one on the left, my left eyebrow drops. When pressure is removed, it returns to normal. If I press on the one on the right, the right side of my mouth pulls down and again, when pressure is removed, returns to normal. And if I press on the space in between, both drop! If I bend forward or lie flat on my back, it also happens. But according to the neurologist, this is not significant as it 'can't happen', in spite of the fact that he's seen it happen and I can't contort my face that way, trust me, I've tried!
But regardless of whether the other symptoms are there on not, my tongue twitches constantly(even relaxed) and my reflexes are absent.
I feel like I'm going insane, I don't want to go back to the Neurologist, because while he assured me that he believes my symptoms, that they are very very real, that there is no medical reason for them so he can't treat them.
If anyone has had these strange symptoms, please let me know, I just feel so lost and alone