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No idea what is wrong yet...

Hi, I still don’t know what I have but this is some of what’s happened since January.

Back in January I had a strange heavy feeling in my left leg and arm as well as sparkling on my left forehead.

Initially it was thought a possible stroke but nothing showed up. One unusual thing showed up in my brain on the right hand side on a ct scan and so I was sent for an MRI. My reflexes were also different somehow. No idea in what way and my left leg continued to be very weak.

So I had my MRI and again something shows up but not typical for MS apparently. Multiple scattered hyperintensities and a lesion in the anterior capsulolentocular region. Whatever all that means.

Well since then I have gone from being able to hike any distance to struggle to walk my boys to school that is two minutes away. I regularly freeze up where I can hear and see everything but can’t respond. Last Saturday I froze or completely collapsed with no use of any muscle in my body 5 times. Sunday was twice and I slept the rest of the time. Monday I collapsed in the same way at the school and an ambulance was called. Heart was checked. It’s fine. Blood pressure. It’s fine. Reflexes tested. Sent for another MRI. No major changes. Went home. Next day collapsed poke a tree being felled and yet another ambulance trip to hospital. Again all the tests done. Heart blood pressure blood sugar etc all fine. Urgent appointment to be made to see neurologist. Before I leave the doctor tells me that although the MRI does not show typical whatever for MS all the symptoms I have are apparently. Being woken up by twitching limbs. Head jolting that’s hurting my neck. All apparently MS symptoms.

is it really normal to get these “seizures” for want of a better word so often? It’s ever day. From 2 to 8 in a day ranging in freezing to dropping. Always aware of everything around me but can’t move anything.

So spongy vibrating legs and arms. Walking like I have flippers on. Stumbling. Headaches. Very tired. Slurred speech at times. Cant remember words or the names of things. Brain slows down. My eight year old son calls this my brain buffering. Lol. Heat cold and tiredness make it all worse. Waiting 12 to 14 weeks for this “urgent” appointment with the neurologist. There are other things that have happened but I can’t think for now.

This all is probably very disjointed as I am typing what I remember as I type.

So this is my first post from a confused frustrated individual. Lol. I’m hoping for an answer to whatever is happening soon enough. Trying to stay positive regardless.

Thanks for letting me rave on.

Can your GP help in the meantime? (steroids?) It may also be helpful for the neurologist for further “activity” to be on the GP’s records. Also, can your GP expedite matters re. having young children?

I have an appointment on Monday to speak to my GP. Both my GP and the doctor in the hospital mentioned treatments like steroids but won’t do anything until diagnosis.

The nodding head thing has gone from that to my whole body trying to fold in half as I’m walking. Completely ridiculous. Tried to go into the centre today by car and had to come home. Collapse in Boots and knocked a whole bunch of stuff of their shelves. Struggled to not burst out crying in frustration.

I hope the GP can speed it up or at least do something.

Thank you.

i love that “your brain is bufffering”

great way to describe it.

the techno generation!

Hi Mykyl,

You are really going through something quite awful. And that’s not helped by the lack of a diagnosis. Nobody but a neurologist can tell you exactly what your problem is.

Are you able to see one privately to speed things up? I think they can always refer you back to the NHS afterwards.

Best wishes,

Anthony

If I get no joy tomorrow with my GP then yes I will see about going private.

Thank you

Mike

Well, apparently I now have a diagnosis.

After an eventful week (see above) and a collapse on Monday I was admitted into hospital and actually seen by a neurologist today. He read my medical records, looked at videos my family have made of me and also looked at the list of symptoms I had written down.

He then did some of the usual tests. Reflexes, touch nose, lift legs and bend legs etc etc etc.

After a tiring series of tests he said “I know what you have.” He said it a few times that he was very confident he knew what was wrong.

He said I have a diagnosis of FND. He started to tell me about it and I didnt react very well to be honest. How could my legs giving out from under me and the countless other symptoms not be real. He assured me they were real. Some of the tests apparently rule out potential fakery I have since read. My head twitched and all I wanted to do was punch my own face and scream at myself to stop it. I was crazy wasnt I. No. What a shock to the system.

So tomorrow I will phone his secretary and appologise to him for my shock, disbelief and sheer surprise at this thing I had never heard of before being my diagnosis. The fact that all I wanted to do was go home and forget it all.

When I was finally discharged my legs still didnt get the message that no physical damage was in my brain. lol.

So now onto my new journey wherever that may take me.

Mike

Hello Mike

You probably know about this excellent website, done by a Consultant Neurologist and academic from Edinburgh, but here’s a link in case you don’t. It sets out what FND is and what it isn’t better than anything I have ever read.

Good luck with your journey through these strange new waters. I hope that you are on the mend very soon.

Alison