I’m new to this forum. I think I’m going mad! In 2002 I fell ill. I lost my speech and had severe right sided weakness. At first I was told it was a stroke, and then later that it was all in my head when my MRI came back clear. After intense physio, speech and occupational therapy help, I got better. I tired easily, couldn’t pronounce some words and dragged my right leg when I’d overdone things. It took over a year to get back to some normality. In 2006, my speech became slurred. I had trouble walking straight, I had pins and needles and my legs felt like they were wrapped in concrete. I had another MRI and was found to have lesions on my brain. I was diagnosed with MS. I wasn’t offered any treatment except physio. Anyway, I got better again. A few years went by and I was okish. Sometimes I could write and other times I struggled to form words on a page. I found typing easier. I’d get numbness in my legs and a feeling that I’d wet myself when really there was nothing there. I started to suffer with bladder incontinence. This carried on and in 2018, I started to experience incredible pain in my legs, a bit like severe toothache and nothing i did helped. I couldn’t turn over in bed, laying on each side was so painful, I couldn’t walk far or even at a normal pace, I struggled to drag myself upstairs or get dressed. Some days I couldn’t even push myself up off the bed. I had another MRI and there were no further lesions. In August this year my neurologist rang me and said I had FND as they’d found no other lesions but my previous lesions were still there! I’m so confused. Has anyone else had this diagnosis before? Thank you for taking the time to read this. I feel I am going mad. I have now recovered from my relapse of whatever it is I have. I still struggle with short term memory loss, bladder and often bowel incontinence and jumbling of my words and not being able to say some properly or even putting the right words in whatever I’m trying to say. It now takes me forever to type as I keep pressing the wrong keys.
Me again. I have googled FND…seems to be a problem when the mind and body kind of disconnecting. Happily the condition isnt dangerous or fatal and can be managed, with the right support.
I looked at the NHS page about it. It does say how the condition can flare and go quiet.
How very bizarre. A non-diagnosis. Then a diagnosis of MS, but no treatment or disease modifying drugs. Then a diagnosis of FND. Strange.
This is a link to the FND Hope website: https://fndhope.org/fnd-guide/ I hope there’s some help on that site. It does seem that many people are diagnosed with FND and the diagnosis later changes to MS, or vice versa. The symptoms do seem to cross over.
Having said that, I do find it odd that the lesions found on MRI in 2018 were (presumably) demyelinating, else you wouldn’t have been given the MS diagnosis. And if those lesions are still there, it wouldn’t necessarily mean the MS diagnosis was wrong. But that’s just my unscientific, non-medical view.
I assume you’ll get a follow up letter (a copy of the letter sent to your GP) explaining why the diagnosis has changed? Regardless, you could write to the neurologist and ask why this very confusing series of events has happened!
Thank you for taking the time to look it up. I really appreciate it. Apparently I’ve found out you can have both at the same time. I’m currently not too bad and I don’t receive anything. I’ve had Occy health before who gave me some bits to help. My neuro said to keep as active as I can manage, so I try to exercise every day and keep moving, as I’m worried I’ll seize up otherwise. Thank you again and I hope you’re doing ok. Take care and stay safe xx
Thank you Sue. They are saying I’ve got both. I’m not sure if this is possible and I wanted to know if anyone else out there had been diagnosed with both. I feel like I’m constantly banging my head against a wall. I will look on that site. Thank you and take care xx
I’m mystified as to why anyone would be diagnosed with both MS and FND. I suppose it’s possible… I’m not a neurologist, so how would I know? But still. Similar symptoms, lesions in the brain suggestive of MS some time ago. Why would a neuro now decide it’s FND as well?
I think you should try to get some clarification as to what the neurologist really believes. Or whether there are any more tests you could have. Or maybe appropriate drug therapies.
I was diagnosed 6 months ago with FND. I think many get this diagnosis when all the tests come back clear. My health improved significantly probably as I result of having some of the nastier possibilities ruled out. However, I am still not fully back to 100% but I am leading a normal life. There is a useful Facebook group FND hope UK. It is worth bearing in mind that most of the posts on the page will be from those suffering more severe cases. I understand a fair number make a recovery or have minor symptoms that don’t progress
Reason for diagnosing FND seems to be no change in lesions. I wouldnt put too much store by this. I had two MRI s quite close together (a matter of weeks) commissioned by different hospital departments (neurology and eye clinic); one found nothing, the second found a lesion on an optic nerve (vision disturbances being one of the things leading to referrals). The tec is not infallible and given your history I would have thought the neuro would be a little more circumspect before jumping in with FND.
After reading your post yesterday by chance I was listening to the latest podcast from ‘This week in virology’ about long covid. The experts were all from the US. They were discussing long Covid which led onto discussions about ME, CFS and also FND. It seems that in the UK FND is far more readily diagnosed than elsewhere. It used to be that FND in the UK was a diagnosis after exclusion of other conditions - i.e. after extensive testing to rule out organic causes. Now some seem to be readily applying the diagnosis of FND after minimal diagnostic testing, and also giving the diagnosis on top of a diagnosis of verified organic disease, such as MS and epilepsy where diagnostic tests have shown clear evidence of organic disease. This appears to be what is happening in your case. In other parts of the world FND is considered a controversial diagnosis.
Well worth a listen.
Is your neurologist from one of the FND ‘specialist centres’? What are your GP’s thoughts on this? I’d be tempted to ask for a second opinion from a different neurologist at a different hospital trust.
An FND diagnosis (which is one that it is essentially that it is ‘all in the mind’ - though dressed up now as ‘software problems’, though in your case, with lesions you also have ‘hardware problems’) can mean that any future health issues you have may be dismissed as ‘all in the mind’ and diagnosis and treatment delayed. It can be a very damaging label to have when incorredtly applied.
Physiotherapy should be available to people with MS, and not require a FND diagnosis for access. Similarly CBT is useful to anyone with chronic health conditions as it gives useful management strategies.
I agree with Ziola and do not believe in FND. I am a mental health professional working in neurological settings a long time. I believe they are a complete failing of the biomedical approach to neurological illness.
There are some prominent professors such as Jon stone in Edinburgh who have been convincing people of FND for a long time. There is no biological basis for their claims. It is dismissive and disempowering and very sadly, as Ziola states, will significantly delay full diagnostic testing and any resulting treatments.