Could this be FND?

[Giop]

This issue going to be long!

In August last year I had to have 2 colonic polyps removed. Obviously waiting for the histology on those was very stressful. It was during this time I developed very scary neurological symptoms.

Tinnitus started in my left ear and my eyesight changed, only slightly but noticable. I put it down to stress and aging and presumed that when I got the all clear from hospital these symptoms would go away... they didn't

The tinnitus remains constant but the eyesight has got progressively worse. It is now double, blurry vision in both eyes. I have had every test. Ct, mri, bloodwork. Seen ENT, neurology, you name it.

This has destroyed my life. I am so spaced out and lethargic and can no longer see or hear properly.

Could this be FND? I know it isn't typical symptoms but I'm absolutely lost now.

[tichondria]

You should get checked for myasthenia gravis as some of your symptoms sound eerily like some of these symptoms. And or also have a brain MRI done and check that out. I was diagnosed with pseudotumor cerebri and that one can drastically effect your eyesight. Not trying to scare you or say you have these things... But just trying to say get tested. The myasthenia gravis one just requires a blood test.

[jhop in reply to tichondria]

An FND psychiatrist her name is Kim Bullock out of Stanford when I met with her once told me that some people have bearing and vision loss from FND - I would not rely on this definitely better to rule out. She has a private practice if you look her up but does do remote sessions. She is very expensive

[Giop in reply to jhop]

I'm in UK. How do I get a remote session with her?

[Giop in reply to Giop]

I have had Brain MRI with contrast.

[artmom]

Don’t forget that according to the proponents of it, ANY neurological symptom can be caused by fnd.

[Giop in reply to artmom]

Is FND just a cop out for doctors who can't find what's wrong?

I'm sure mine is a brain tumor that was missed on mri. It was only a 1.5T machine. I've not been diagnosed with FND but have been referred to 'unexplained symptoms ' which was basically a 10 minute chat with a psychiatrist who thinks I'm bonkers and imagining it all. Doctors now refuse to send me for any more tests because I had a clean MRI.

So I feel like I've been left to just deteriorate. My Mind is really slow now, extreme fatigue, spaced out. Double vision, tinnitus.

My family no longer believe me, doctors and A and E think I'm nuts.

[jhop in reply to Giop]

Yes it is a diagnosis for any neuro symptom when it’s medically unexplainable by tests i also feel the same way

Dr Bullock is an FND Paychiatrist and will likely also see it this way. But she could prob tell unif she has seen those symptoms before I bet the fND centers I. U.K. wouldnalso share that with you. She has a website

kimbullockmd.com/aboutme

[jhop in reply to jhop]

Feldenkreis also has shown to help with eye issues look up feldenkreis for eyes

[Hidden]

Sjögren’s syndrome dry eye disease can cause a lot of different eye and neuro symptoms.

I’m also in UK and have Sjögren’s and Hashimoto’s. I also have tinnitus, small fibre neuropathy (SFN), Raynaud’s, Erythromelagia and chronic GI problems related to these. I have tremors and fluid retention everywhere and balance issues that were diagnosed as FND but are actually a mix of severe Sjögren’s fatigue and loss of sensation from the Raynaud’s/ SFN mix.

There are so many autoimmune conditions and other vestibular disorders and migraine that can cause vision and hearing issues - please don’t let yourself be blown off with ‘FND’.

Even common conditions like type 2 diabetes and degenerative disc disease can cause neuro symptoms that are often overlooked in the early stages.

Just about every symptom known to exist is listed on the ‘FND’ neuro symptoms website - so you really need to do your own research into biomedical conditions such as Sjögren’s, Vasculitis and Lupus - not to mention EDS and MCAD - whichever seem to match your symptoms best. About 30% doesn’t show in blood-work either.

The problem is that these diseases or conditions I’ve mentioned here are under researched, under diagnosed and under estimated. Whereas ‘FND’ is likely to be a cheap, easy diagnosis - probably a very over diagnosed disorder (if it is even a disorder in its own right that is) that gets right in the way of important research and good science.

[Jofachiz1]

Just from personal experience. A lot of people develop symptoms after surgery. One cause of these symptoms can be a condition called POTS or Orthostatic Intolerance which is triggered by surgery and a number of other conditions.

A simple way to test if you might have it is to get a smart watch or something that can measure your heart rate and see if it increases by more that 30bpm when you go from lying to standing.

POTS can affect your vision, heart rate, cause fatigue and weakness etc.

I was also initially misdiagnosed with FND by a lazy doctor and it has taken me nearly two years to figure this all out. Turns out I also have a rare genetic disease too which has reared its head causing paralysis, slurred speech etc etc.

I am not convinced that FND is a condition in itself but rather a way of dismissing symptoms which doctors don’t understand and usually delays diagnosis of organic illnesses.

[Spanner46]

Hi Giop,

I have FND, fibromyalgia, NEAD, Tinnitus and pruritus. Mine started a few years back very gradually. I then got ear trouble, loss of balance, constant tremors, chronic fatigue to name but a few. Over the last 2 years i have got steadily worse, with all sorts of symptoms. I now have Tinnitus 24/7 in my left ear, occasionally my right. I also started with blurred/double vision, flashing white shapes and my eyesight lost colour during this, then i had constant headaches 24/7 for weeks. I can go deaf momentarily. I find doing anything very overwhelming and i am very fatigued, i too put it down to age, and doing too much. Eventually, just over 2 years ago when things really got the better of me, having had several tests, including MRI i was diagnosed as above. I did hear that certain areas don't always have the best specialists to recognise FND, i am lucky to be under one that does and i have a very good Neurologist.

Spanner46

[Notecards in reply to Spanner46]

Where do u live?

[Spanner46 in reply to Notecards]

I am under the Sheffield Neurology Team

Spanner46

[Giop in reply to Spanner46]

I too am from Sheffield! Who have you seen? Nair? Sharrak?

[Spanner46 in reply to Giop]

McKevitt

Spanner46

[Giop in reply to Spanner46]

Where is he based?

[Giop in reply to Giop]

She?

[Spanner46 in reply to Giop]

It is a lady and Hallamshire Hospital

Spanner46

[Joharley]

I also have tinnitus in my left ear and my vision also got worse. Hmmmm

[Giop in reply to Joharley]

Do you have other symptoms?

[Joharley in reply to Giop]

I have tremors in both hands, fibromyalgia, gait disturbance, vision getting worse, neck and lumbar radiculapothy, IBS, and many more to list. I see the first dr for the assessment next week. I am in the Milwaukee, Wisconsin area