Jus finished an unexpected week in hospital after being taken in due being unable to move or lift my legs or feet properly or at all. Something had been happening previously as I’d had numb and swirly tingly feet and legs fr a while and popping sensations as if my muscles were pinging or being poked.
A quick MRI scan showed no ‘noticeable’ change since the last ones I had ( 2 months ago ), but ‘hyper reflexes’ mentioned by one doctor along with ‘ankle clonus’ upon ad,ission to hospital.
After nearly a week of tests, the neurologist basically said they can’t really say what’s wrong at the minute, but are still waiting for the oligoclonal (?) bands part of the lumbar puncture to come back before they say wnything.
In the meantime, I was given details of a website detailing FND symptoms and also put on Amitriptilyne and Baclofen ( I think). I’m just waiting to be contacted wuth the lumbar puncture results and possibly get a diagnosis.
Prior to this session in hospital, I had been referred privately to a neurologist by my GP ( I’m lucky to have private medical insurance from work) as I was having the feet and legs feeling along with a bit of double vision and an eye that seems to twitch and flicker a lot when looking at things. I also struggle for words quite often - both my wife and work have noticed recently.
As I was seen in hospital by a neurologist who didn’t cover the other things that are happening, should I carry on with the riveter neurologist appointment in a few weeks time?
Also my wife thinks I tick more boxes with MS symptoms than FND, although FND does match a few. Are both so close they’re hard to check for?
Sorry for the long post - don’t know if it’s the meds that are making feel drunk, but I’m really glad that the item I’m typing of has a lot of auto correct use.
The problem with MS, and with many other diagnoses including FND is that there are literally hundreds of possible symptoms. MS and FND share so many symptoms that it seems the problem can be that a neurologist might give you a working diagnosis of FND pending definitive evidence of MS.
This is what appears to have happened for you. While the MRI has shown something not quite right, chances are the scans haven’t shown ‘dissemination in space and time’ as may be necessary to fulfil the criteria for MS diagnosis.
The criteria for MS diagnosis is called the ‘McDonald Criteria’. Have a look at: McDonald criteria | MS Trust It sounds to me that your scans haven’t shown dissemination in space and time, so the presence of oligoclonal bands in the cerebrospinal fluid is what the neurologist is looking for to make the diagnosis.
If your CSF is negative for ‘O’ bands, it seems that there isn’t evidence to support a diagnosis of MS. So then you’d be left with a diagnosis of FND. Whilst if there are O bands in CSF (but not in blood serum), you’d be diagnosed with MS.
It’s got to be a really tough time for you and your wife while all this is going on. Stuck between two diagnoses. It must appear so random to you, you have some anomalies in your MRI scans. But not enough to prove it’s MS meanwhile the diagnosis of FND seems a bit of a catch all.
I don’t necessarily think it’s a bad thing to have a diagnosis of FND. Was this the information you were given: What Is FND - FND Hope International ? Ultimately, the two diagnoses share so much that it seems to make sense to diagnose FND in the absence of proof of MS.
Thank you Sue - your explanation makes a lot of sense.
It’s taking a bit of time to come to terms with what is going on, especially as it’s likely to go one way or another depending on the oligoclonal band result.
Thanks for the link - that’s different to the one I was given by the neurologist, but it’s good to see that it’s a known issue and I’m not alone with with these symptoms. Thank you again.
I’m guessing that it’s a waiting game now - hoping that if it comes back negative I’ll still be told as there wasn’t any reassurance that they were going to confirm a negative result.
Any idea what the normal wait time is for the lumbar puncture ‘O’ band result? Was told 2-3 weeks .
