Neuro appointment soon.... Avoiding an FND diagnosis

I have a neuro appointment next week because the past year I've had some pretty horrible 'neuro' symptoms including ongoing tinnitus and vision issues.

I worry that the consultant may push an FND diagnosis. We all know this is the flavour of the month.

There is of course overlap between my symptoms and FND but my overall experience is that I fit the diagnostic criteria for ME much better than FND. For example, I have what I call 'immune' symptoms such as lymph pain, sore throat, flu-like muscle soreness, etc. that just aren't consistent with FND.

Has anyone been in a similar position?

 

I don't know how it is in UK, but in the US most neuros don't rush to diagnose with FND or psychosomatic or so on.

I find most will fire me pretty fast after test results come back ("good news; you don't have MS [you're healthy or you should go to rheumatology]"... "people like you tend to improve quickly"...)

The one neuro that did want to make such a diagnosis was going to refer me to a specialist in this. But did other tests first. Luckily for me some of them came back positive. And I changed docs. So they never got a chance to actually put that in my chart.

I made the mistake of telling this story to another specialist, however (as I thought they might educate the previous neurologist about my new diagnosis), and now that department hates me (not my doctor, who isn't there any more).

 

I had my appointment yesterday.

As expected, it was pretty underwhelming. The consultant wasn't personable in the slightest and came across as dismissive. There was no in depth discussion of my history, and he paid no real attention to my ME diagnosis.

He conducted some routine, very rudimentary neurological tests such as touching my nose, balance, grip etc. And then essentially just ordered an MRI scan.

He was very dismissive about my tinnitus, suggesting it was an ENT issue. Surely he must realise tinnitus is almost always a brain issue rather than an 'ear' issue. This annoyed me considerably, especially as one of the main reasons I was there was for visual issues that I see as an analogue of my tinnitus ('noise', hypersensitivty, essentially).

He asked about some symptoms and then kept asking if I had any more. Yes sir, I have a list as long as my arm.

He asked about my eye floaters (not the most pressing issue with my vision). He then asked if they were transparent and like 'raindrops', and despite me affirming the former but not the latter, he later said he thinks he knows what is going on with my floaters and mentioned a condition / diagnosis with a longish name that I had never heard of. I asked if he could write the term down and he said no he can't spell it! I literally couldn't believe it. Does anyone know what this might be?

No mention of FND, though he did ask if I had a history of depression or anxiety and if I felt anxious at the time.

It really made me realise, if I was in any doubt, that the average consultant/specialist is decades behind in understanding.

 

I have come to realize many doctors are entitled pricks who resent the oafish patients they must endure and tend to, resent the reduced pay they are forced to accept, scream against the Fates that stole their promised luxuries, find too little solace in drinking too much too frequently, and typically pick the losing team in any sport their drugged intellect can grasp.

Marcus Welby is dead and the line of doctors to replace him stretches miles and is populated by rubes.

 

Yep - I get that. I've seen ENT specialists about it over the years. My point is that it shouldn't be simply an ENT issue. Ironically, the end point of presenting with unexplained tinnitus is an ENT specialist sending you for an MRI scan.

 

I've had an MRI appointment through and it's for a spine/cervical scan as well as a head scan. Quite surprised by that - was just expecting a head scan. Don't expect anything to be found, but glad the spine MRI will be done too.

 

Neurologists are known for generally having bad bedside manner. It seems to go along with the specialty.

I have a neurologist who I like (he is older & toward end of his career) and he previously diagnosed me with FND. However he never tried to tell me it was psychosomatic or that I needed mental health interventions. Rather he simply told me that doctors don't know everything and can't always explain a person's symptoms.

While it was frustrating not to get an explanation for my neuro symptoms I appreciated his honesty. Shortly after my initial workup with him (brain MRI was also done) and the resulting FND diagnosis I was diagnosed with ME/CFS by another doctor, but in my case ME/CFS ended up being a misdiagnosis. (It was discovered that I have a very rare autoimmune disease which has no biomarker.)

After my autoimmune disease was diagnosed my neurologist retracted the FND diagnosis in my records per my request.

 

It's standard for them to also scan the cervical spine when doing the brain because a disease such as MS can cause lesions in the cervical spine so they want to make sure to rule such things out. They did the same when I had my initial brain MRI done.

 

"Doctors are the same as lawyers; the only difference is that lawyers merely rob you, whereas doctors rob you and kill you too." - Chekov

 

I have never told my doctor about the tinnitus even though it’s present all the time and tends to increase when my disease is worse or if i’ve done too much.

I have been wanting to investigate all of the symptoms and all avenues since sick. After all, this disease is of high consequence, being on disability and unable to return to pre-disease life as i knew it. But investigating all the symptoms can prove difficult, because of stigma and the utter lack of knowledge of consultants. So many of them do not know what to say when they face the unknown. So many simply ‘take the money and run’. Then when you start reading their consultation notes, you notice that their biases reach farther than them, and the bias follows you around. It’s quite unfortunate.

It is not that nothing is wrong with you, it is simply that medicine hasn’t caught up and they do not have answers at the moment. We need to press for research and science.

Lastly, as a word of advice, remember that a negative test such as MRI doesn’t mean there is nothing wrong with you, it simply means that the major diseases, brain tumors, multiple sclerosis and such have been ruled out.

 

I'm in a quandary at the moment. I have an upcoming GP appointment which I made up about a new rash. I don't know whether I should mention other newish symptoms which I think are neurological. I've written about them on the Signs & Symptoms - Strange Sensations thread. I'm particularly worried because although I'm not in the Lothians, I am nearby & I don't know how far the FND contagion has spread.

Part of me thinks don't mention these (possibly neurological) symptoms because I could be setting myself up for a world of pain. On the other hand I think they're significant & also if something else comes up in the future, it could be perceived negatively that I didn't mention them before.

 

Thanks, Trish. I probably will mention the symptoms. They are nice at my GPs surgery, but in this case I think I'd prefer it if they fobbed me off & didn't refer me on. In a sane world, of course, I'd want a referral, but it's being so close to FND central that is giving me pause.

 

I wouldnt let location sway your decision to much, i live a very very long way from FND central & was still given that dx, so although i could be wrong, i wouldnt have thought the location makes you any more/less likely to get given one.

I think if you get referred with neuro symptoms for which no signs are found then its likely you will get an FND dx wherever you live, however, if you dont say anything, then you risk having something neurologically wrong which could have been treated/helped, going unnoticed.

I think the FND thing is so thoroughly embedded in medical culture now that people who are true believers will think that an ME/CFS dx is FND anyway, and behave accordingly, regardless of whats recored in your notes, and in the rare case you might come across someone who isn't a true believer in FND, they wouldnt be swayed by that label anyway so.... ?


Wishing you the best of luck whatever you decide

 

I’m not in the UK but I heard a psychiatry colleague mention FND and cite Stone’s incorrect prevalence estimate in neurology consults. I had never EVER heard anyone use that phrase offline in my life previously so the cancer is definitely spreading far and wide.

I almost replied “ACTUALLY, those figures are completely wrong” but then I thought better of it and kept my mouth firmly shut.

 

Why didn't you say anything, are you afraid to lose your job?

 

Yes, or losing credibility. I mean, this stuff is so prevalent now.