Virus and FND

[DNE92]

Hi

I was reading the trail about the person thinking she will simply soon be diagnosed with FND. Somewhere in the responses someone mentioned viruses in the brain. Well just the other day my hubbie was told by someone (although not an FND sufferer) that when they MRI scanned her for some mystery illness, strands showed up through her brain. She was told that these were the scars left from a brain virus and that was probably what was causing conditions similar to ours. Makes you think doesn't it that perhaps there is/has been a virus in our brains that has cleared up but left scaring. Wish someone would investigate that possibility. I think my husband was given a reference about this and I'll ask him tonight when he gets in from work.

I'm so fed up with dumb Drs saying things like pseuydo seizures. Yeah I bring on these horrible attacks 2 - 3 times a day just for the fun of it! I wish I could just burn all my medical notes so they never see that title ever again. Why aren't these people trained. They have to do mandatory professional training every year - they should make understanding rare illnesses a compulsory element of their training over the next year. I know Dr Stone says it's relatively common in his clinic but that's because he is dealing with neuro illnesses all the time. He gives as an example that in a town the size of Birmingham would yield 60 - 90 people with the illness. Birmingham (UK) has 1 million inhabitants. Do the maths - it's NOT a common condition.

Hey ho, the joys of just making things up in your head - FND = imaginary friend? I think not.

Cheers

Lou

[angelite]

Lou, I like your style ! 4 1/2 years ago, I had a stiff neck, movement disorder, NEADS, entrainment etc following a chest and stomach virus. Lasted 6 1/2 weeks. Morphed into more 'traditional' weakness/balance/buzzing issues for another 2 months. My MRI was clear 2 days into illness. I was 'suspected brain infection' but eventually put down as FND a year on. I had elevated white cell count for 5 months, swollen lymph nodes, slowed EEG waves. Left with cognitive/physical permanent issues. No further tests - just FND and goodbye, refused physio and signed off. Back to work at 6 months on reduced hours and disability remained stable for 2 1/2 years. Then sudden severe UTI, sepsis and MS type relapse for 2 months, more permanent, stable disability, job loss. A year later, bad chest virus, relapse. More permanent disability. Neck and Cspine clear. Hoping they will rescan my brain at some point. Food for thought ... x

[DNE92 Moderator FND Hope UK in reply to angelite]

Hi

wow what an awful catelogue of things to deal with. I'm going to push for another MRI scan and if the NHS won't do one I'll go private. You just get the feeling that there has to be something organic behind all this but the medical profession just say that there is no organic cause. But not much about the brain is known so why is it just so quickly ruled out. I think that the Government just doesn't give enough money to allow these extremely rare disorders to be fully investigated.

Cheers

Lou

[cgarff]

Hey Lou, you know we all got together one day and said.. Hmm. That looks like something fun to do, let's just screw up our lives for the heck of it, and see what happens. Maybe we won't have to work etc.. Ya right.. And cows fly!

I have questioned the virus thing as well. My issues as far as I can tell started with a cold 8 1/2 years ago. However the last MRI they said my brain looked impecable, although years ago.. But who knows.

However they told me the Saudi or non epileptic seizures (several docs) and one finally took me serious, did tests, and we found out I have both non and epileptic seizures, so you never know. I guess it takes getting a doc to take you serious to get things looked into, not just thrown under the bus.

Keep smilin

Cheryl

Hugs to all!

[marie75]

Hi I'm intrigued to hear about the scarring on the brain or virus that a lot of you are talking about. I was diagnosed with fnd after one minute being entirely normal, I had an injection at the base of my skull for eye pain that I'd had for years immediately my symptoms started. They have however said my symptoms are nothing to do with the injection just said I had fnd. But when In hospital they wrongly diagnosed me having a previous stroke as they found scarring. I've since been told it wasn't a stroke but maybe schizencephaly as I had been born premature. But again nothing to do with my sudden onset of fnd. I never really had clear answers as to why one day I was normal the next not! It has neen two years now i still can not talk or walk properly and use a wheelchair. Plus I can not take on new information or be crowded or tolerate noise. I just do not understand it all.

Marie x

[Ailsaw]

Completely agree Lou and to quote that they are not dangerous is so misleading , perhaps in themselves they are not life threatening but I have been in several really dangerous situations when I have had a seizure . Seizures leave me totally paralysed and unable to speak no wonder I'm scared as totally vulnerable. I get fed up with these so called professionals making statements about something they don't actually have and in actual fact don't really know what they are talking about so we could actually say the same it's all in their head and they just make it up as they go along !!!!