VEP appointment has finally arrived!

New diagnosis and before diagnosis
1

This feels like a last chance. After a clear MRI, an initial diagnosis of Functional Neurological Disorder, a 10 week CFS/ME group therapy and a second neuro who didn’t event want to put a name to my symptoms but did refer me to Addenbrooke’s for my possible Optic Neuritis/ odd vision related symptoms.

I am once again in that weird rock/hard place. If they find something, I might get a new diagnosis. If they don’t, I’m in this fuzzy FND/CFS/ME space.

I’m still hoping for answers, still can’t shake the gut feeling that MS is playing hide and seek with me. However, the therapy course I’ve completed (but still under the care of an excellent OT for three more months) was so helpful. I’m armed with information and am gradually making positive changes. I do have the odd crash/relapse now and again but have goals to work toward.

In addition, the CFS group have gelled and we’re continuing to support one another.

So what do I need to know about Visual Potential tests (no, I got no prep info).

2

Hello, I’ve also been told Functional neurological disorder, I’ve felt so down about it, there is such a lack of help and I feel as if i’m treated as if I have mental health issues, and just left on the scrap heap, I’ve had CBT, well still having it, its not cured me but i felt it would help me come to terms with the disability and life changing things like using a wheelchair,

I hope you get the answers, its a long lonely journey, so glad I’ve found this forum.

Michelle x,

3

Hi Reiliblossom, I had the vep test last year and found it very easy. They stick electrodes on your scalp, sit you in front of a tv and tell you to look straight at screen. You are looking at a checkerboard pattern that moves. It takes about 15 to 20 mins and is completely painless. For me this was when they started thinking Ms as the signal from my right eye was not traveling correctly to my brain.

good luck,

ann x

4

It’s a very comfy chair I have eye problem so I couldn’t stop blinking lol eyes watered but that’s normal due to my uveitis test came back and I have nerve damage in both eyes but I had brain lesions and positive LP.

All to best xx

5

I spoke to my neurologist about functional neurological disorder, there is a very good website about it actually written by a doctor with a lot of sense.

It means you have a neurological disorder but of no determined cause, but its still real…it just means they havent found out what is causing it. It has NOTHING to do with Mental Health Problems. (Conversion Disorder).

He actually told me not so long ago they used FND term for Parkinsons, so that was a functional neurological disorder too because it was so difficult to diagnose it still can be apparently.

My neuro is fab, we often chat about stuff, as I had positive MRI, VEP tests, and stuff but it still took ages to get told MS…I believe my age was against me lol (63 now), but he always treated me as i have MS and now its on my notes.

At least with an FND diagnoses you can get help which is all good.

As to the VEP test, its nothing, just electrodes on your head and staring at a chequered board. It did give me a bit of a headache.

I was diagnosed with positive ON with my left eye being more then high enough on the scale for MS, and it was also found in my right eye but not so bad. It just showed that my brain was slow to receive signals…indicating MS or similar.

I must admit my left eye does droop when i am tired, and goes blurry.

So good luck with your test, but embrace FND as it will open doors to other treatments, and it really does mean you have a neurolgoical problem but like i said they havent quite pinpointed the cause of it yet, but it doesnt mean it wont present itself in the near future. The brain is very complex.

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Hi Reiki - The test is very straightforward, and nothing to worry about, just make sure you have clean hair on the day, it takes about an hour if I remember rightly and just involves sitting on an armchair watching a 1980’s tv!

Glad to hear you are getting further investigations done… I am not sure of you remember me havent been on for quite a while but I had previously been told I had functional neurological disorder back in 2011. I never believed it though it just didnt sit right but I got on with life and tried to forget until I had what we thought was ON (but as my vep is normal looks lke it wasnt) in Dec13, followed by some symptoms which I now know to be transverse myelitis in Jan 14.

I still dont know what is causing it, though I have just been referred to the MS team. Been in MS limbo for over a year and still not sure what will happen so trying to come to terms with the idea that I may never know. Not sure what I am trying to say really, other than trust your instincts - if you believe that something else is wrong then you are probably right. But also that you may not find the answer at all, so try and focus on living life as well as you cn at the moment.

Take care,

Leah xxx

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Thank you Leah, your comments will help so many of us, I hope all goes well with Reiki.

Michelle x

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Hi, Golden girl, your message was very helpful to me, as I have been told FND, but feel as if it has never been explained properly, and have been left to get on with it, i’m just about to change my doctors, as i feel that my current GP and practise can no longer help me, It doesn’t do anything for your self worth, I feel uncomfortable asking questions. Hope all goes well Reiki

Michelle x

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Hi Michelle, have you found www.fndhope.org? From there you can get access to a (well, a few) private FNDHope Facebook groups. I’m on the general one (under a different username) and the MindBodySpirit one they run too. I highly recommend joining if you haven’t already :heart:

I use a wheelchair too, only part time and usually for big shopping trips or days out with my family. I don’t drive, walk my daughter a mile to school in the morning (using a stick) and use a mobility scooter in the afternoons or for both journeys on bad days. It is a shock to be needing aids like this, especially if you’re not elderly (I’m a young 40). Best of luck.Feel free to PM me if you need to.

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Hi Goldengirl, yes, I have embraced the FND diagnosis - in fact the first neurologist pointed me towards www.neurosymptoms.com which has been helpful. She also suggested the CFS/ME therapy route and I’m so glad I got on the course! It was just the second neuro who threw a spanner in the works by refusing to agree or disagree with the first neuro’s diagnosis…but he has referred me for this test, so I’m not complaining too much.

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Hi Leah, yes I do remember you! (well done, brain!) I’ll make sure to wash my hair that morning. I hope the purple hairdye won’t matter… You speak a lot of sense. I have more tools under my belt now to cope with the multitude of symptoms, the support of a wonderful OT and a group of people who are in a similar situation. The CFS/ME group get on so well that despite our regular weekly course having finished (bar the one to one and review sessions) we’re meeting up again on the same day anyway! I’m so grateful for the network of support that surrounds me :heart:

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The guy who did mine rubbed a lot of gel off so I didn’t need to wash it again lol.

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Thanks Reikiblossom, I went on the FND web site this afternoon. I found it very interesting, its still hard to get my head round everything and like you said a shock to be needing aids… I never ever would I have imagined my life changing so much a couple of years ago I was running around my sons paper round and busy with the children taking them swimming driving all over the place and just being a busy mum, felt okay, although i did have weird feelings in my legs I felt wobbly like i was in space and walking like astronauts do and so tired and funny pains in my neck and pain like toothache in my arm but just got on with it… then when i collapsed in May 13… the lot went I couldn’t stand just went completely floppy, it lasted for weeks. Im loads better now but left with a mobility problem I have to really concentrate to walk… I stiffen my legs its like a completely new technique but I fall loads so couldn’t begin to walk outside, i’m not to bad in my own house but when go to my friends house I end up crawling.

I think it filled me with horror to think my mind could do this to me, but it also made me feel I was a fake and unhelpful comments didn’t help me, my GP told me I should try being more positive and maybe I would get better, i felt so upset, i was really trying my hardest.

Did you find it humiliating using a wheelchair? I hated it! The first time out, I went seeing my little girl at school in a play, i felt awful like everyone was looking, now i’ve got used to it, we bought a power chair in March and i’m slowly getting more confident, especially since getting Frazer [assistant dog] in November, now when i go out i hold my head up high he makes me feel so much better. I still have down days CBT is helping but its hard living without a diagnosis or shall i say a diagnosis that I believe in. Unfortunately there is such a lack of support for FND

Thanks for listening I hope all goes well for you, I have read a few of your messages in the past before I joined the forum and always found them helpful.

Michelle x

14

Aww, thankyou Michelle. I’m glad to have been of help! My first wheelchair use was a borrowed one in a supermarket and it was actually weird but enjoyable, as I wasn’t scared of falling over and much less self-conscious of doing involuntary movements in public. I bought my own and tried using it on the school run but it is too much hard work, so I ended up getting out and using it like a rollator half the time! I was very self-conscious of letting the other parents see me with it. Since then, I’ve got a mobility scooter for the afternoon trip (I try to keep walking the morning one when I have more energy and my body is better at doing what I ask of it!). Best wishes x

15

My eye pain and dimness/reduced red perception is back. I hope that they will be able to tell me if I’ve had/ am still having Optic Neuritis or not. The symptoms are usually in my right eye but oddly seem to move over to the left sometimes. I can’t find any explanation of this. My right eye is worse. On a sunny day it seems like a cloudy day and my vision is just not as clear and steady as it used to be. Before last August I had perfect sight. This is, I admit, a little frightening.

16

The people doing test only asked me to read the letters on wall eye test letters and he just said so you do have a problems with eyes, I said yes eye specialist diagnosed uveitis although this was before my Ms diagnoses.

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Well, that was one of the more pleasant test experiences, despite the sticky goo I had to wash out of my hair (two hairwashes in one day! Surprisingly tiring.) The person doing the test was a lovely, smiley sort of person, the kind who puts you at ease…and being relaxed for the test seemed to be important.

First, I was asked to do a standard letter chart eye test. Then they measured my head carefully and I think drew dots, stuck electrodes on the side and back of my head. I had to cover one eye at a time and stare at a little red square in the middle of a checkerboard which, when the test started, alternated black and white. Yes, it does your head in a bit! They did that twice for each eye.

Now I have to wait a week or two to get the results.Yet more waiting…

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Glad it went well hun. Are you not seeing your neuro as they usually give you the results?

The tests are weird sort of arnt they lol…and the hair thing mine was stiff when i got home lol. x

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I don’t expect to see a neuro again unless the test comes back ‘abnormal’ or I have any significant increases in my symptoms. I’ll be getting a letter about the results within two weeks. That’s all I know.

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Update: After being told that I’d get results in 7-10 days, still nothing. So I phoned up to enquire and was told that they don’t post results direct to patients but the results were read to be faxed to the doctor who referred me.

I dreamt about this last night. It is so hard to wait for results sometimes. I’ve no idea how much longer I need to wait now… I’m stuck in a thought-loop : ’ If its clear I need to accept FND/CFS and get on with it. If the test proves Optic Neuritis, it might be MS but I might be stuck in limboland longer, or finally get the bombshell I’m expecting.’

Not very healthy, I know, but here I am. I’m doing well with my CFS/ME rehab tools,have a fab OT and a supportive group. I just need clarity.