FND Diagnosis

[RedmistAl]

Hi all,

I am new to the forum and hoping to speak to others that have been diagnosed too.

I’m not overly sure how to navigate this site yet - is there one place to browse all FND-related forum posts or is it a case of typing in a search bar and seeing what you find?

Anyway, I have a battle in my head - my Neurologist (who is clearly very good) diagnosed me with FND last month. However, I have had a hard time accepting that this is the case - did anyone else have this issue?

Basically, I was hospitalised in April this year with endocrine issues. However, I originally presented to hospital with fatigue and difficulty swallowing. After 11 days, I was sent on my way having been wrongly diagnosed with Primary Hyperparathyroidism. This has since been proven to not be the case.

While endocrine investigations are ongoing, Neurology became involved at my request after I noticed difficulty with certain fine motor skills - picking up objects without dropping them, sometimes reaching through/beyond them, difficulty with balance and walking etc (being heavy footed and feeling like I was going to topple over every time I looked or bent down).

I have tons of symptoms which I won’t list here but the main ones that are bothersome are:

Vision issues - floaters that are difficult to focus through/beyond and lasting afterimage which is usually a shadowed or negative version of whatever I’ve just looked at and sort of overlaps whatever I’m looking at now. These all scare me to death to be honest. I’m also light sensitive and sometimes see my vision shake when I’m stationary.

Muscle Weakness - I have lost lots of muscle in my arms, legs, shoulders, neck and upper chest what muscle I do have is shorter on the bone and weaker. If I curl a set of dumbells, the left bicep in particular will not grow or get a proper pump. It’s like the nerves don’t work, but I had a nerve conduction test and an EMG which both didn’t show any issues.

I also have eye muscle issues I think - which doesn’t help with and may even cause some of the above vision issues (always completely fine on eye tests, though I am waiting to see a Neuro-Opthamologist).

Twitches - I get muscle twitches in my arms and legs. These tend to come and go.

Fatigue - oh the fatigue is REAL.

Hearing - anything loud I am sensitive too and it hurts my ears. My tinnitus in my left ear also went from barely noticeable ever to barely forgettable - it’s there constantly and has a new, lower tone and a very high pitched rasp/squeak which reminds me of those things that you can put in your garden to keep cats away. Not pleasant.

Brain function - I feel like there are actual neurological changes that have made me depressed, anxious and unable to sleep easily. Speaking of sleep, I often find when I close my eyes, I start to play out scenarios in my head within a couple of seconds and these tend to repeat in various forms over indefinite periods of the night and morning.

I find it very difficult to get up in the morning. Not wake up (tend to wake early now and struggle to get back off due to scenario playing) but I fear the day ahead most days so I struggle to get up. I also don’t feel like I have the same level of joker in me as I did. It’s like my spirit has been crushed by struggle.

Just wonder whether anyone has had similar symptoms, particularly the ones affecting the eyes/vision? I cannot get past this all being related to my endocrine issues as otherwise having all the endocrine issues as well the Osteoporosis they’ve found on this journey (in my spine) is all just one massive incidental finding/coincidence.

However, my Neurologist is clearly excellent at what she does and I do trust her so I probably just need to accept what she says. Difficult to do so when you have so many things wrong and when the list and intensity of symptoms keep on growing.

Sorry for whinging - would love to hear from anyone who can relate to my symptoms and/or journey.

Many thanks and I wish everyone who reads this the best of luck in their own journey.

[MONIREN]

Hi there, so many different symptoms with FND, I now realise that symptoms I had years ago were probably linked. Yet, I am not as bad as most. My symptoms are getting worse, my physio has linked my vertigo to my neck, which the jerking that happens makes my neck worse. I don't have your eye issues, but generally weak and numb on left side of body including my eye. You will find everyone with varying levels of disabilities. I was diagnosed 2018. No help given, but since found great physio that is working with the symptoms. I didn't have a problem accepting diagnosis, but keep an open mind and have had many tests. Hope you find someone here you can relate to. One step at a time. Take care. Moni

[RedmistAl in reply to MONIREN]

Thank you Moni, I did think about going down the physio route. My psychotherapist also recommended it.

I might ask for this via my Neurologist and see how I get on.

Glad you’ve found something that works for you and thank you for your reply. All the best.

Al

[Lady4 in reply to RedmistAl]

Definately get PT and OT on board as part of your multi-disciplinary team.

[RedmistAl in reply to Lady4]

Will do. Should I do this via my Neurologist (in your experience?)

[Lady4 in reply to RedmistAl]

In the UK we got the referrals done by the Dr (although we never got to see OT and just one PT session and another neuro PT session). Not sure the referral process in USA, could ask GP.

[RedmistAl in reply to Lady4]

I’m in the UK so same applies. Will make enquiries - thank you.

[Lidldidl]

hello RedmistAI 👋🏻

I’ve a similar story with many of the same horrible symptoms. Diagnosed in hospital with Ataxia. I was in hospital 5weeks with near fatal Meningitis. The very competent & trusted Neuro physiotherapist queried Ataxia over FND which she felt was the case. 2nd opinion Neurologist has confirmed Opsocolonus Myoclonus Ataxia after 2 lumbar punctures & batteries of blood tests. These are really tough things to accept & live with. Would you consider asking for a 2nd opinion? I have similar eye, ear, swallow and other symptoms you mentioned. Keep questioning.

Ataxia UK is a very helpful platform too. Stay as positive as you can , best wishes

[RedmistAl in reply to Lidldidl]

Thank you for your reply.

Looking at that, it appears to be something that can manifest as a paraneoplastic syndrome as part of a response to a cancerous tumour. Does that match your situation? Or was yours caused by the meningitis?

The reason I ask is that I suspected Paraneoplastic Syndrome initially - my neurologist did run bloods for the full panel of antibodies and didn’t find any, plus I have had clear CT and PET scans, so I’m told Paraneoplastic Syndrome is out of the question. This is the main thing I’m struggling to get past! Amazing that you would mention something similar or that can occur in such a scenario.

How did you get to the point of a spine lumbar puncture? I did request this but they said no because the bloods were clear of paraneoplastic markers. My Neurologist did however say I don’t present like someone with paraneoplastic syndrome and then asked me “how many people have you treated with paraneoplastic syndrome?”to make the point.

Would love to hear from you further.

Thanks.

[Lady4]

Hi and welcome, this is the FND group.

I think the stress and anxiety comes with not knowing and the change of life and capabilities and its normal.

Its good that you have a great neurologist thst you trust.

Self care is really important and breathing techniques might help.

My friend suffers from floaters which are usually worse when she is tired or stressed, so maybe try and address sleep issues. I get what you mean about not wanting to face the day and stay in bed, perhaps tey and have a little schedule of tgings (not timebound and achievable - positive reinforcement.

Diet and maintaining your social connections are also neuro positive.

Maybe some noise cancelling headphones may help dampen down/eliminate some background noises too.

You can also get special glasses for slight sensitivity, I have just ordered my son some blue light blocker ones for use on screens. During my research I found that there were diff levels, the highest being sun glasses.

[RedmistAl in reply to Lady4]

Thank you, I am still working and on a computer at that, so I will certainly look into the glasses. I am struggling to do that though, I have to say (work) but needs must - I don’t know what we will do if I have to give up work. I have 2 young kids to support.

anyway, thanks for all your helpful suggestions. Cracking bunch of people on here so far.

Thanks

Al

[Lady4 in reply to RedmistAl]

I was told the Prizm Gaming ones from Italy are the best and our Optician matched the price, can even add a prescription.

[Lady4]

Image above shows with or without, I read some good reviews.

Colour photo

[Sparklingsunshine]

Some of those issues sound like migraine, do you have any history or family history of migraine. Also have they checked your thyroid levels?

[RedmistAl in reply to Sparklingsunshine]

Hi, yes they have checked my thyroid levels and as for migraines, I don’t typically get them… this seems to be all day everyday too… is it possible to get migraines for that long and that constantly without any actual headache?

[Sparklingsunshine in reply to RedmistAl]

Yes it is they are known as vestibular migraines, sometimes people get them without having any history of migraines previously, car sickness in childhood can be a risk factor. I have a diagnosis of vestibular migraine, also known as silent migraine.

I do get migraines but nowadays rarely get the headache but get the dizziness, imbalance, light and sound sensitivity, nausea. I also feel off balance 24/7 especially when I'm upright or walking, its better when sitting or laying down. Its also known as MAV, migraine associated vertigo.

Mine started after I was diagnosed as hypothyroid. Its underdiagnosed, often fobbed off as anxiety or Meniere's, Labyrinthitis but doctors in the field feel its likely much more common than the figures show. Migraine is a complex neurological condition, not just a "headache".

[RedmistAl in reply to Sparklingsunshine]

Really interesting! Is anxiety and stress a risk/cause do you know?

[Sparklingsunshine in reply to RedmistAl]

I use a forum especially for Migraine, chronic dizziness, PPPD, called mvertigo.org. I didnt personally suffer from prolonged stress myself but a lot of our members said they experienced, stress, burnout, illness, bereavement, overwork.

It seems as though getting these sorts of conditions can be due to perfectionism, type A personality, or people who are hard on themselves or put everyone before themselves.

Just a heads up there are a lot of really good resources on Youtube showing how thexe sorts of conditions arise, how they can be treated. Some people use low dose meds, often beta blockers, or antidepressants, some prefer not to. There are resources on relaxation, calming the nervous system down by meditation or breathing. And vestibular exercises that retrain the brain.

If it is migraine then some people find avoiding the 6 C's can help, caffeine, cheese, chocolate, citrus fruit, chinese food and Chianti ( actually booze). As these are common triggers and can set off VM. It doesnt work for everyone but an unfortunate effect of migraine is your body becomes incredibly sensitive. To smells, food, lights, moving screens, busy environments, sounds. Everything overloads a sensitive nervous system.

Check out that forum. Its very very informative. It mentions medications, natural remedies, lifestyle changes or is just a place to talk to others going through the same. There are several youtube channels that are good. The Steady Coach is particularly helpful. She's a vestibular audiologist. Or there are patient experiences that detail symptoms, diagnosis, recovery.

[RedmistAl in reply to Sparklingsunshine]

Thank you, that’s really informative and I will definitely consider that migraine might be adding to my woes. Thanks again.

[LuluHealing]

hello! I also suffer with fine motor difficulties… typing this message to you on my phone is a bit tricky. What worked for me was following the neurophysio guidance online which says to distract yourself and do similar movements to the ones you struggle with but practice them while distracted. For example i struggle typing on the computer or phone and picking up small items like cups or fruit (random I know). Anyway I did some crocheting while watching tv, which i havent done for a while, and found that a) i was able to do it and b) it improved my ability to pick stuff up! Super excited about this… anyway i hope you can try something similar