When to go to ER and when to sit and wait?

[sherwoodpg]

I've written a lot here lately as I'm newly diagnosed. Typical with many people here, I chased Dr's, imaging, blood tests for close to two years before getting diagnosed. During this time, especially towards the latter stages, I had a higher threshold for acceptance when issues presented themselves. For me it's been tremor, jerks, weakness, hallucinations, tinnitus, etc... I told myself countless times "no one is going to have an answer for you, or a medication to relieve your symptoms..avoid the ER ....wait it out..."

The problem is my symptoms are definitely progressing. For the past 7-10 days, It feels like my brain is under attack...progressively worsening..its buzzing, a headache, eye pressure, extreme memory loss, hissing in ears. I have a mindless job, and im making way too many mistakes. All extremities are shaking, burning...twitching constantly all over my body. Feels like my cell phone is buzzing on every part of my body. My gut tells me this is what a tick-borne issue feels like , or meningitis etc...something systemic. I fear waiting around for it to lift on its own is cavalier, especially when dealing with my brain. This is clearly a brain issue.

I guess im looking for some guidance/opinions on when you treat a situation as "just another FND symptom" ....and when you act like any normal person would with these symptoms, and go get checked?

[Van604]

I agree - most people who developed symptoms like that would see a doctor. Our problem is that these types of symptoms are seen as "normal" for FND, so it's incredibly difficult to get doctors to do any type of investigation once we have an FND diagnosis. I had an enlarged thyroid with a nodule show up on MRI and the internist didn't want to follow it up because she said I was being well served by a neuropsychiatrist! If you can find a doctor who will listen, I would say go for it.

[Mattie21]

I think people with fnd have a bad reputation for being "frequent flyers" to hospital. Maybe I'm imagining but there does feel like a level of passive aggression by some health staff with enormous wait times, calling you a "complex patient" in a patronising tone of voice, and forgetting to put canula in etc so you can only get half the test done...

I get its hard for them (feeling like patients are unnecessarily adding to their workload, but its also hard on the patient (both serious medical issues and non serious medical issues can cause a flare-up so how are you meant to know if you can't order your own tests etc). Even fnd patients who have multiple visits to ICU can cause ire with their presentations to hospital.

If you are ever concerned/feel its exceptionally urgent go to hospital. But if you can buy yourself time (bunker down at home, get time off work, avoid stimulation, stop cleaning) do that instead. Also put into motion medical tests that might be useful for example I was able to ask my GP to write a script for an MRI and it was better to wait a few weeks not knowing than go to hospital etc.

Recently I've had good success working with a nurse who I found on a website where you usually find support workers etc. She's helped me to write a hospital avoidance plan so if I ever have to call ambulance they will see if a paramedic can come out to my home and order tests without me having to go to emergency etc.

I don't think anyone knows answer to your last question. I've been accused of not taking my symptoms seriously, and taking my symptoms too seriously in the same 15 minute consult!

[padraig34 in reply to Mattie21]

Hello MattieHow did you get a GP to order an MRI?

All I could get them to do was order an ordinary X-ray

They told me they could not order scans.

They even told me they could not refer me to a consultant which was a complete fabrication.

The Xray was a waste of time nothing, of course

Then they told me it was OK

I finally managed to get a consultant after being wrongly sent to a physiotherapist who told me I was not OK and neither was the ordinary X-ray.

Apparently, the GP specified the wrong X-ray.

The Consultant ordered a scan, but no doubt I will have to wait a long time for that too

It's great in the UK, isn't it

So much for NHS

.

[Mattie21 in reply to padraig34]

Hi, yeah I'm in Australia. I'm also 'lucky' in a way as my fnd symptoms came on the same time a large brain tumour was discovered so I'm down for yearly mri the next ten years so I just had to advocate to bring forward scan by a couple of months so I did it privately and then cancelled the hospital one as I could just show the mri.....what's it like in UK can you go looking for new GP? I find it's best to trust your gut and switch to new one, the caring/more analytical/big picture thinking ones will often have a longer wait list. So it can be good just to schedule one for down track so you can get on their list. This article is pretty good on showing comorbidity high for fnd so threshold should be lower for investigations onlinelibrary.wiley.com/doi...

[GardenPlant]

It is difficult to know what to do but would not go to ER - I went and was there 8 hours then sent home with no help - if you are under the care of a neurologist any new or worsening symptom can be communicated to them as they would know how to deal with it.

[padraig34 in reply to GardenPlant]

ER or A@E is a waste of time.They look at you like you should not be there after ordering a bunch of useless bloodwork and give you a plain Xray and make you wait for 10 hours

Then they treat you like an idiot.

and if you show up again soon, they accuse you of malingering

Its bad in the UK because an A@E is all you can get

The GPs wont even see patients most of the time

At my GP, you have to first go through their triage where some young girl asks you a bunch of questions and wants to know why you want an appointment with a doctor

Then all they do is call you back at home and its not always a doctor usually a nurse

[GardenPlant in reply to padraig34]

Agree with the individual and ER - I went to ER before my FND diagnosis and treated very poorly - they actually questioned why I was even there. Now do have an incredible neurologist whom I am to call should my symptoms get worse and have done this.

[thinkin]

Hi,

FND is definitely a brain issue. A build up of the neurotransmitter glutamate is found in the areas of the brain affected by FND.

They don't seem to know facts such as 20% of FND patients have other neurological conditions. COVID is not only making many new FND sufferers, but it is making a personal hell for some of those already suffering. FND is not a vaccine against other illnesses and so you are just as likely to suffer other health problems - perhaps more likely in some cases.

Unfortunately, histamine is a neurotransmitter that effects FND. You can get into a downward spiral quite easily. I think of it as an "itch scratch cycle" of the brain. More we have to give our attention to it the worse still.

If you can't get anywhere with your doctors then try for some patient advocacy from charities such as FND Hope. They even keep someone legal on hand if they put up a fight. Get others in your corner. You shouldn't have to suffer like that on your own. FND is real as real can be. Getting worse because you are distressed in not a sign that it's "all in your head". Having other's who can explain that to them in a practiced manner, with the might of the law on their side will be a good place to start.

XOX

[Jillymo]

Have you considered your symptoms could be down to a B12 deficiency ?

It might be a good idea to get this ruled out - I did private blood testing at resonable low cost.

[Van604 in reply to Jillymo]

Yes, I was found to be very deficient in B12 when I was in a prolonged collapsed state (over a month) 4 years ago. I was prescribed 1000Mcg a day. That was by a physiatrist (physical rehab doctor). Neurologists/neuropsychs seem completely uninterested in body chemistry, which I can't understand. Every time I have a "seizure" (actually a collapse) my potassium levels have dropped significantly from my baseline, but they just brush that off. They just want to put it down to "distress", even though I have never collapsed when things have been really bad in my life. It's just so frustrating not being listened to.

[Jillymo in reply to Van604]

The only thing Neurologists seem to diagnose these days is Functional Overlay, I am to see one next month.

I would get private testing done and try and raise levels of what your defcient in - folate, iron ect.

I really do not think Drs or consultants have a clue of how destructive and life changing B12 deficiency can be.

I hope somebody reaches out to help you but not holding my breath as I am in the same boat.