Can anyone help??

Hi There,

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.

Started with:

Hemifacial spasm - right side

Slurred speech

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 :(

10 Replies

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  • hi, my symptoms are different from yours

    but i would like to ask a question . have you banged your head ?

    some of it sounds like mini stroke ( my mum has had lots) so i no symptoms /signs

    whats confusing is the lumps on your head.

    personally i would get another opinion,

    sorry i could not help but your not insane

    just after an answer.

    hope you get this sorted very soon

    bev

  • Hi,

    Thanks for taking the time to reply.

    I haven't banged my head, sometimes I wish I had! It would be so much simpler. The lumps are very strange, it's just some kind of swelling, when pressure is applied, facial symptoms appear. But I've been told that this isn't actually possible.

    We only discovered it purely by accident, I had a horribly painful attack on Thursday after bending over to get something out of the fridge and when I got back from the doctor, I lay down on the sofa. My head was resting on the arm of the sofa and BOOM.. full on attack again. My partner decided to test his theory that it was something to do with my neck and as he put pressure on my neck nothing happened, so he moved upwards and discovered the swelling at the base of my skull, then we noticed that each side has a different physical reaction.

    It's all very confusing.

  • Are the lumps perhaps lymph nodes? They may also be pressing on nerves causing the change of symptoms. Did your doctor mention which symptoms he found to be functional? such as a positive Hoover sign?

    Either way I would consider the possibility of overlay or a co-morbid diagnosis. A significant change in white matter in the brain can be a sign of Sneddon syndrome. A rare vascular disorder with stroke like symptoms can be from cerebral vasospasms causing a stagnant blood flow but not actually cutting off the blood flow which then does not show on MRI's. This is not due to inflammation of the artery but the actual endothelium wall is compromised. It is sometimes made worse or a connection to the autoimmune system. There are other illnesses that may have more to do with swelling at the base of the neck.

    My main point being if your GP doesn't feel comfortable with a purely functional diagnosis then it is best other rare illnesses be looked into. I would suggest a different specialty many things such as vascular, endocrine, autoimmune will present as neurological illness but are not.

    When in doubt have it checked out.

  • How in the world can it be functional with absent reflexes? Functional means that the brain can not produce the right signal or can not process the signal correctly, but lessened or absent reflexes mean there is a physical damage to the signal transmission pathways. Look for another opinion, FNDs is right, you may very well have a functional overlay over a real neurological damage (this happens more than often).

  • Hi everyone,

    Thanks for the replies!

    The neurologist based his diagnosis on the fact that I had been under a lot of stress in the months prior to illness and he couldn't find an organic cause for the ischemia. I do not have a positive hoover sign, when the power in my limbs goes, it's gone, it comes back within a few hours though thankfully!

  • Hi I can relate to all your symptoms apart from mine is on the left side even down to the lump at the base off the skull I am currently taking Tramadol MR 200 2XDAILY and Pregabalin 100mg 4xdaily I have to say it has helped but I still get attacks at the moment I am having a bad time off it with left side not being able to move cant find words when talking to people and having non epilepsy seizers I no longer work I have had this since end off 2010 and I have been left to get on with it the doctors at the hospital just said O its CD go home at get better well I would if I could I am trying but as I just start to think yes its gone it come full pelt at knocks me down again I have just ordered a electric scooter as I am finding really hard to walk for long periods of time I am 48 years old and have not been troubled in my younger life I have a good up bringing and I have had a very good life since I got married 30 years ago so I don't believe its some thing in our past that has caused this, some times I have to go out in a wheel chair as my left side wont work and I cant stand up this really up sets me but we moved in March this year to a adapted flat which has help a lot as I can do a lot off things for myself with out having my husband or daughter having to help me, so I would try the meds and see if they help it did take a while for the doctor to find the right meds for me and my meds are for migraine as they also said it was migraine. I take the Tramadol for nerve pain which I get in my left leg and arm. I hope this helps you and puts your mind at rest feel free to email me if you wish

    Regards

    Debra

  • Hi Debra,

    Thanks so much for your reply, it's good to know I'm not alone (with my crazy head lumps ;) ).

    It would be great to talk further, I'm not sure how to email through the board, but I'll give it a go!

    Thanks.

  • I had the same problem as you and was told that it was a conversion disorder.

  • im sorry you are going thru this.im the big skeptic of conversion disorder..i think its possible for someone to have physical problem from stress.no other sp ecialty labels people with xpsychiatric dx.you see a dr about stomach pain.they rule out ulcer.they treat you and saw stress can make it worse.not a psychiatric dx.havin said that ,you have a dx.try the meds.see a diff dr.keep notes.video tape.hugs and prayers.marie

  • HI sorry to hear your goin through all this stress but I have been goin through it too I had the weakness the speech turned cockney all right side and was told by neurologist it's fnd but after several scans and hospital appointments a year of he'll and a lumbar puncture from he'll laSt july I had a stroke and I'm left to pick up the pieces I've been basically laughed at and riddiculed by several so called medical professionals I stuck it out went to all my appointments and was finally diagnosed with aretrial fibrilation and finally put on meds to stop me from having a major stroke i'm getting on with my life and to hell with some of the paramadics that treated me like I was a drunken and a faker

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