The start of my FND journey began with 20+ lesions found deep in the white matter of my brain (and is why I was first diagnosed with MS).
Has anyone/does anyone deal with/heard of FND patients having white matter lesions??
I am trying to figure out if they come together or if I happen to have both, simultaneously. If that makes any sense.
I have not had an MRI since 2018, and I have had nonepileptic seizure-type events for the last 4 years. I am trying to convince my neurologist to request an updated MRI.
Please reply if you know anything about this subject. Thank you and best on your journies!
Meg
**thank you to everyone who is replying. I am going to reply back soon.
*** I just want to clarify that after testing, spinal tap, etc MS was ruled out. I went to Cedar’s Senai in Los Angeles and was also told that the lesions were not like lesions found with MS or other inflammatory disorders. This is why the medical care went in the way of ‘functional’ disorders.
But does everyone with FND have deep white matter lesions?? Much love and health 💖✨
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Mom1314
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Hi Mom1314 I am truly sorry that you have been diagnosed with MS. I hope you are doing ok? My FND journey started with deep white matter in my brain. They did an MRI on my brain and said the amount I had was normal for my age and diagnosed me with FND. Then I started with paralysis of my face, severe migraines, pins and needles in my hands and feet and falling over. Restless legs syndrome. They told me I had unresolved issues since childhood (whatever) sent me for CBT as I also have other health issues(CBT did not work) . I am none the wiser 4 years later. Exhausted but still fighting. I see physio for my face nothing for me falling over or a tendency of walking towards the left?! I see specialist 1 a year who says that my FND is linked to my other illness and just to get on with it. Which is what I am doing . Seems like we are a burden to the people who are supposed to help us but don’t X Sorry for the long winded reply. If you feel you need another MRI then demand one!! No one knows you better than yourself! Look after yourself from another mum in uk. Sending you a big hug stay strong Xx
"The start of my FND journey began with 20+ lesions found deep in the white matter of my brain (and is why I was first diagnosed with MS)."
I have got FND and I had an IRM in June with lesions found in in the white matter of my brain. You may see the Fazekas scale for white matter lesions, which are normally present as we get older.
So, may be, you need an advice from a neurologist, to understand if you have to be worry about it or not.
Wow, I didn’t even know there was a scale like this. I am extremely grateful to you for sharing. My neurologist does not take the lesions seriously because you can get them as you get older. But 1. they can also be from frightening brain disorders that have exact symptoms we are having, including bladder issues that I am having of late (sorry for the TMI). And 2. I have around 20+ actual depressions, and research studies that I have read so far with mid-life subjects have at most 9. So why wouldn’t more testing be done? Anyway, thank you so so much. My best to you, Meg
My daughter has white lesions. She was 14 when they showed up and they said they were non specific. Her FND mainly showed in not being able to walk, locked jaws wrists and legs and non epileptic fits. She has trauma in her lifestory and has had EMDR therapy which tremendously improved her symptoms. It is not that she is without symptoms but they don't get as bad and don't progress as far and as rapid as they used to.
I have always been interested in the white lessions showing up because reading journals on the white lessions they always are associated with dementia in older people. So the major question I would like to see answered is Why do they show up in a 14 year old and why do they call them non specific?
But then again when she couldn't walk and I took her to Manchester Childrens Hospital to ask for investigations the pediatricians came back with : medically unexplained and said 40% of children got that diagnoses. I managed to get a referal to their pediatric neurologist and she instantly diagnosed her with FND and said 20% of children in their practise had FND.
They said they didn't have a treatment and send her to Healthy Young Minds and they only offer general CBT. which is not really effective. Hence I looked for alternatives and got her EMDR. I would like to go back for a brainscan at some point and see if the lesions now have disappeared or if they are still there.
Unfortunately the whole brain inflammation idea is new and I have not found ANY research into white lesions and FND. I would be interested to see when the white lesions lead to MS diagnosis and when into FND diagnoses. And even more interested in what causes the white lesions? What are they?
But it is probably another 10 years before someone can answers those questions.
Oh my goodness, first of all, bless you, your daughter, and family going through this. On one hand, I want to say that the awareness may be a good thing. I remember a ‘change’ in me @ 14. 17 was my first episode with convulsion, we brushed off. And other symptoms for the next 20 years. On the other hand, I have no idea how it is and probably should not be commenting in the first place!
You are talking directly to me and my story, the same questions…thoughts, wonderments. I am so happy to hear EMDR has helped. My mom has always thought that could help. We should look into it again. Thank you for this.
Yes, how does a 14yr old have white lesions? Sorry, I know we are talking about your daughter. It sounds insensitive to say (write)!! But yes, that’s how I feel and I’m 41. Like how and why are they there? I am going to do my best to get answers. I will keep you and your daughter in my thoughts. All my best to you. ✨💞 Meg
Thank you for your reply and I am happy it was long! And thank you for the hug 🤗 that’s really sweet. I will keep fighting, because I am a mom, and my daughter wants and needs to see that. I finally did demand the MRI yesterday, so we will see. Thanks for the support. And sharing your story with me.
I wish you all the best Mom1314 and I am pleased you demanded an MRI👍X We all need support sometimes as not everyone understands all the different things we all have going on besides what we are already dealing with ❤️Take care of yourself and your daughter X
I was dx with Hemiplegic migraine after I was mis-dx with fnd. White matter hyperintensities are common in migraineurs. Having numerous other issues I self referred to Prof. Jack Lambert who thinks I may have neurogical lyme disease. It is called the great imitator. Even as I await bloods he has started me on a lyme protocol. The brain fog is lifting and Ive had improvement in other areas. It is worth noting that patients with ms can also have fnd. Wishing that God sends the right Dr your way. +
I highly recommend you get lyme testing. Also ask about autoimmune encephalitis. FND is just another name for conversion disorder. Press on and be persistent. Hyperadrenergic autoimmune responses can often look like FND and Lyme is the great imitator. Best wishes !
Theres a lab in Germany, Armin Labs, get tick plex plus pkg. There are others in the states too, igenex? Prof Jack Lambert is in Dublin and Edinburgh also. Highly recommend +
Hi there. My story sounds a little similar so I thought it might be worth sharing with you but I’m not sure it will help much. My symptoms started out of the blue, I was having twenty minute episodes of “spinal myoclonus”, I was sort of convulsing like I was being electrocuted, but was awake. Loud noises or bright light would trigger episodes throughout the day. Other symptoms included deep confusion, speech and comprehension difficulties. My brain MRI showed white matter lesions and the report said I had chronic small vessel disease….which chimes with dementia and Alzheimer’s. But I was only 42 years old. I had to wait ages to see a neurologist after that result, but then I was told it was nothing, might have been a stroke, might have been MS but nothing conclusive. Since then I’ve been fobbed off with a diagnosis of FND, but anytime I question it, I’m gaslighted.
Since then I’ve started to have problems with my hands including writhing muscles in my arms. Following electric conduction tests they have found nerve damage, but still won’t commit to a diagnosis.
I wish you lots of luck with your investigations, and I’d love to know if you make any progress. I have given up my journey for now, I was finding the appointments so frustrating it was making my health worse.
Short answer; NO white lesions do not have to be present to have FND,
Longer answer; many people have severe brain trauma, brain injuries, other Neuro diseases such as MS and Parkinson's, Stroke and other Neuro conditions such as OCD, Tourettes Syndrome, PTSD, Epilepsy, Paraplegia, Hemiplegia, Cerebral Palsy the list goes on... and ALSO HAVE FND.
FND is caused by someone's brain reacting to something in their lives to survive the immediate threat/s seen as either mental, physical, emotional or biochemical systems needing extra support temporarily. FND happens because the brain does not fully come out of this survival mode and return to a normal balance of these systems, usually in varying degrees over prolonged periods. This is why FND Neurologists have more success with patients recovering or getting `cured' if they are treated with therapies within 3 months of the onset of symptoms. Because the affected brain systems can retrain and activate learning circuits that much bit quicker and build stronger links to keep those changes back to a normal pattern.
However, when the brain has been left for a long period after the initial event/s or is already severely compromised, it becomes stuck in those abnormal processing patterns -blurring the lines between what is normal actions and what is abnormal actions required to function properly for that person. This is totally unique to each individual, which explains why plotting symptoms and progress are difficult for FND Patients, as opposed to monitoring commonly experienced predictable symptom/progression patterns of say MS or Parkinson's.
`Treatment' (I use the term loosely) for FND is always the same no matter what the cause i.e daily self-management of symptoms and adaption/acceptance of lifestyle limitations to avoid/reduce triggers that are making things worse, where ever possible. Of course the main difference with FND and other Neuro conditions/disease management is...
More medical professionals trained in dealing with and assigning consultants/services for those others
More medical interest and research for those others (as some are progressive & life threatening - unlike FND Classification)
More drugs trials and effective treatments for those others
More tried and tested helpful therapies and usually available more widely for those others
More funding and support networks for those others
So you can see where the confusion and frustration occurs with FND Sufferers when you look at how other Neuro conditions and diseases get support and FND fails to get the slightest recognition from the public or even understanding within the medical profession!
I HAVE HAD FND FOR 9 YEARS NOW AND HAVE LEARNT A LOT ABOUT IT AND WITH THE HELP OF MY DOCTORS AND NEUROLOGISTS HAVE LEARNT TO LIVE WITH IT.
WHEN I WAS IN THE PROCESS OF BEING DIAGNOSED, MY SCAN CAME BACK WITH MANY WHITE FOSSI LEGIONS ON MY BRAIN, AND THE SCAN PEOPLE WERE QUESTIONING IT, BUT WHEN MY DOCTOR RECEIVED THE RESULTS SHE SAID THAT ALTHOUGH THERE ARE MANY WHITE LEGIONS IT DOES NOT NESSECARY ADD TO OUR FND??? I HAVE OVER THE YEARS THOUGHT ABOUT THIS, AND WONDER IF IT CONTRIBUTES TO THE FND AS MY MEMORY IS BAD BUT MY DOCTOR DOES NOT THINK SO?? I ON THE OTHER HAND DISSAGREE..............
Hey Meg,
I was diagnosed with PPMS after a year of being told FND. And I can tell you all my lesions are in my spine.
I think your symptoms are more from the MS and not FND. Sure FND could be caused by the stress of loss of function and life changing circumstances. But I can honestly say you are not alone in this. I may not have brain lesions but I do have deep spinal lesions.
"`Treatment' (I use the term loosely) for FND is always the same no matter what the cause i.e daily self-management of symptoms and adaption/acceptance of lifestyle limitations to avoid/reduce triggers that are making things worse, where ever possible. "
That's it "adaptation/acceptance" to a new style of life with FND, even if "it's a long , long way of mental and even spiritual interiority" to accept what is inacceptable.
Oh trust me, I 100% agree with what you are saying. I was more commenting on what I thought your question or concern was.
I don't believe we as humans fully understand how to "Treat" FND, which makes me comment on the validity of the disorder itself. I know it is real, but I question to how much of the symptoms are caused by stress and how much are they caused by another problem and stress just makes them worse.
Finding what can trigger a flare up is a good way to go about it. But the more we learn about what causes stress, we could brainstorm all day a mountain of things to avoid. So is the real solution with finding the triggers or finding a way to allow the brain to move through each new event calmly without having a flare up?
That sounds like a really dumb question, but I ask it mainly to show, that FND an extremelyc crippling disorder is thrown to the wayside while any other disease that causes the same problems gets treatment like a King or a Queen. In relative speaking that is.
yes I too first had the lesions found on my brain I started with around ten of them ,now over 20 lesions a year later , I stood up to go to the toilet one early morning and fell as my leg right was completely numb and ached on the inside badly I thought I just had slept on it in a strange way , so I spent the day rubbing it hopping it would get better but proceeded to get worse basically turning into a piece of useless flesh hanging from my body that I could only manage to fling around is the best way I could describe it , then I started getting the shakes or tremors on top ,the hospital neurologist did all sorts of tests and diagnosed me with FND even though my doctor thinks it is more than likely MS ,, I even spent a lot of money to try and get more help also just the consult was a lot of $$ to see one of the top FND specialist in Australia dr Alex Lehn at the matter hospital in Brisbane to see if I could get more help , he spent most of the consult on the phone to his wife and said if I had the money he could treat me but because I was a public patient it was a no ! He also told myself and my mother he thought I had both FND and MS then apparently told my doctor a completely different thing . We were pretty upset by the time we left . And still to this day ( 3 years later ) besides More physio and pain meds Thats about all the help I can and have received , very frustrating as the NDIS doesn’t even recognise FND as a diagnosis , I am still having many strange symptoms even though I have gained back some use of my right leg it still seems to just become numb randomly and in somewhat of a cycle or episode . I’m not sure if I have any further lesions now although I have strange headaches now I am due for an updated mri to see if further lesions have developed
i have had the same battle since leaving hosptital.I left with major damage in both legs, from the forece PT to walk again,. not a soul in there would do any tests on my legs, Now in a wheelcahir and struggling to get walking again due to the dislocations no one will deal with. FND doesn not cause dislocations... it causes NO organic or physical damage. yet here we are...
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