It seems like blindness, but is most ... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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It seems like blindness, but is most likely all in your head.

Charliemyheart profile image
9 Replies

Not fully what the doctor said but close enough. I have had vision loss after hitting my head. Went to a eye doctor, then was sent to another, and then was sent to a nero ophthalmologist.

In the first visit he wants me to see a psychiatrist, and saying no more tests are needed. Then calls back when I get home and says no actually we need to do those tests still. MRI, and checking the optic nerves.

If he is right I will deal with it and get the help I need if there is any, but part of me wonders can my own mind cause this? Vision loss, ringing in my ears, weakness on my right side?

I feel so silly, And wondering why can't my mind just work right?

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Charliemyheart profile image
Charliemyheart
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angelite profile image
angelite

Hi Charlie,

First off, you have had a head injury. Whether this is post concussive syndrome, which is deemed minor upset to signals and thus reversible or whether there is more damage than at first appears, you do need these tests.

This 'all in your head' mantra that is trotted out so frequently these days by doctors is utterly unreasonable in all but the clearest cut cases of conversion disorder.

There is simply not sufficient known about the workings of the brain, nor advanced enough tests available to show why some malfunctions are happening.

If technically, all the pathways of vision to the brain seem unharmed then the problem could be with how the brain is interpreting its visual information once it arrives in the brain 'depot' that deals with vision. This does not mean that you have a psychological problem. Doctors often abuse the psychiatric label these days as a convenience when they do not have the medical ability to explain a malfunction via conventional tests. It gets them off the hook and gets you off their books !

If you have minor damage ( which may not show on scans ) then hopefully it will correct itself in time. You can help out by doing exercises and training your brain to make new connections to strengthen your defecits ( neuroplasticity : medicinenet.com/script/main... ).

If your scan does show damage, then you will at least be taken seriously and get the appropriate medical help.

I assume you have been directed to this website : neurosymptoms.org/

I'll plop a tinnitus ( ringing in ears ) site in, mine occurred a month into my illness ( suspected Encephalitis ) and is a problem with how the brain interprets sound :

nhs.uk/conditions/Tinnitus/...

I would like to ask about your blindness ; does it come and go or is it a permanent state ?

Kind regards, Angela x

Charliemyheart profile image
Charliemyheart in reply to angelite

Permanent state mostly might see a tiny bit more if the light doesn't hit it this where or that. I do fall mainly in the legally blind range.

I fit the bill on having mental health issues, and a family history of them. But before this I was healthy happy, working, and going to go to college.

His attitude was these tests will show nothing, and most doctors would just waste my time and do the tests. Which I don't get.

angelite profile image
angelite in reply to Charliemyheart

Hi again,

Regardless of whether you may have had any mental health issues in your own or family's past, if these symptoms came on immediately or shortly after the head injury, they need investigating !

As for snotty attitudes from professionals ( who behave disgracefully at times and should know better ! ) I have encountered many and simply do not allow them to upset me. It is their own insecurity that makes them behave in this way, as science does not yet have all the answers to brain malfunction and they are often too proud to admit that ' we simply do not know'. Easier to find something to blame it on and mental illness is often the scapegoat excuse used.

NHS does seem to have a money saving policy these days by reducing the amount of tests that would ordinarily be considered routinely appropriate. Of 3 UK guideline tests for suspected Enceph, I got an MRI which was deemed clear, 2 days into illness. Further research has shown that early stage inflammation often does not show on scans, contrast dye can help but was not used. EEG was not given until 10 months after the event and lumbar puncture never offered ! White cells elevated for 5 months, lymph nodes swollen for 2 - clear signs of infection in the body. Almost 3 years on and I am left with permanent, non fluctuating symptoms of spasticity, tinnitus, memory and concentration issues, none of which fit in with the fluctuating pattern on FND website ! Positive reflexes and Romberg test. Told that I had an infection that had gone to my brain at 5 months post illness, then later put down as FND by the same neuro who was totally rude the second time and refused to answer any of my questions ! Refused to refer me for physio too. Am I sceptical - you bet !

Seems like the rules of neurology are sometimes bent so far these days they are on point of snapping !

Best of luck with your tests and please keep us informed,

Angela x

giltnane profile image
giltnane

pleased that the doc reconsidered as is doing the mri test with fnd if you do have this you can loose your sight and it's not in your mind . it's messages not getting through. go on to fnd web site where you can get lots of information. it's a lot to take in but may help good luck

Charliemyheart profile image
Charliemyheart in reply to giltnane

I have been looking hard to expect, but I understand it is a possibility. And I tried to join the Facebook group.

I just wish if this is what I have I could explain to my mom her daughter isn't losing her mind like some other relatives.

giltnane profile image
giltnane in reply to Charliemyheart

I understand your worries and fears. try and get your gp to refer you take the fnd info and highlight your symptoms. I know some GP's are not very helpful at times but unless you have a specialist that can direct gp can't think of a different route to get that . good luck see if you mum can help you . take care

brenda21 profile image
brenda21

I have bad FND none of it phsycologically caused and this is confirmed , vision problems some real and some fnd vision probems the fnd ones come and go , but as these problems started immediately after an accident u musnt be fobbed off u must push for all the relevant tests to make sure there is no damage to eyes....and if there is get help as soon as possible

Charliemyheart profile image
Charliemyheart

A friend, former nurse is pushing me to get a second oppinon no matter what. Stating if I was her daughter it would be what she would be insisting because of how this doctor is being no matter what he says.

Charliemyheart profile image
Charliemyheart

Well I have good news my new doctor feels it is most likely CVI cordial visual impairment. Which is rare in adults, and hard for doctors to figure out because it is different for each person.

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