Not a stroke

Posted , 4 users are following.

Just over 5 years ago, my left side of my face drooped and i was unable to speak, I went to my local A & E who thought that it may of been a stoke, I was kept on the stroke ward over night after having a CT scan...A stoke and TIA was ruled out.

 I was able to get an appointment to see my GP within a couple of days as symptoms came back. He was going to send me to London to see a neurologist as they had a quicker seeing time, as he had no idea what was going on.  But then decided against it and sent me to see my nearest  one which took a while for the appointment to come through.

Over the following weeks my face and speech got worse.  I went back to my local A&E and they took bloods and sent me for a MRI, but all came back normal and it was put down to Hemifacial spasms, and was told the i would have a EEG appointment come through and to see a neurologist who was based 30 miles away,

I thought great will get some answers (how wrong was i ) the neurologist got me to raise my arms and walk across the room and stuck a piece of cotton woll into my eye, then sent me on my way....

.I have been having these attacks now for 5 years and learnt to live with them, but last July i had 2 weeks worth and was kept in hospital over night, but sent home next day after being given intravenous diazepam. and got told i would see the neurologist again and have another EEG as there were sharps and spikes in my last one ( 3 1/2 years earlier)

 I had my EEG this Feb and saw the neurologist this week, still no answers, now waiting for a nerve test to be done from head to toe.  

 and she wants to see me again in 3 months...and she is asing for the very first neurologist to see me.

3 weeks ago i collapsed and was taken to hospital with suspected stoke, as had left side weakness, could not get my words out, but again this was ruled out.  since then i am unable to lift left leg high enough to go up stairs and i am also getting electric shock type feeling across left side of body and face.

any advice who be great

 

 

1 like, 7 replies

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7 Replies

  • Posted

    forgot to say that i have left side weakness in arm and leg and also pain in my lower bac left side
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  • Posted

    Hi Samantha,

    You cannot rule out strokes with CT scan. You need MRI. The only reason they use that is it is cheaper. The CT scan gives you more radiation too.

    If the first neurologist does not find anything, I would ask for a second opinion and see another one. You could do other tests, but generally, the available radiology tests (brain angiography, PET, SPECT) all have a high risk (or is not negligable the wording) of giving you cancer with a single exposure. 

    Have they taken your blood test?

    I hope you get well.

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  • Posted

    Hi Samantha,

    Was Bell's Palsy ruled out when it first started? I know that obviously it has got progressively worse and Bell's only affects the face but the start of what you described does sound like what a friend of mine has just gone through.

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  • Posted

    Hi Samantha,

    I'm sorry that you're having problems.  To me, this sounds like hemiplegic migraines.  Maybe research this topic some and then bring it up to your doctor on your next visit if you have one scheduled.  There is also a hemiplegic migraine Facebook page.  The hemiplegic migraine foundation support group Facebook page. There is a website to hemiplegicmigraine.org  These migraines present like strokes but aren't. One side of your body goes weak or even paralyzed. The Facebook page may be the most helpful though. Anyway, hope this helps. 

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    • Posted

      Not been on page for while, I got my doctor to refer me to Southmead hospital in Bristol. as i joined a support group on facebook for hemifacial spasms. I had a blood vessel knuckled to my facial nerve. Have had surgery in Bristol and i am now spasm free, the leg and back problem is due to a prolaspe disc which i found out in Feb of this year after i had another fall. now waiting for spinal facet injuections.
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