Diagnosed

[Kerry1969]

Hi guys I got diagnosed 3 yrs ago and my symptoms are a lot worse now so dr referring me back to neur dr which will take months for apt

[angelite]

Hi Kerry,

I was diagnosed as FND over 3 years ago, following a severe neurological attack which followed the pattern of Encephalitis at the time but my MRI was clear. I was left with some physical and cognitive issues. Fast forward 2 1/2 years and a severe UTI that would not respond to oral antibiotics led to sepsis and 2 hospital stays for repeated treatment. During this time I had a repeat performance of many of the later symptoms of original illness and am left with worse spasticity, balance etc. I have had to give up work as a result and am awaiting a neuro appointment, after the pattern this time is suspicious for MS. It took 5 visits and finally an OH report from work to shame my dismissive GP into referring me !

Perhaps you could share your history with us ? - What symptoms you began with, if you had any infections that maybe triggered it etc and how your symptoms have evolved over time. The waiting times are ridiculous and the standing joke in our house is that I might have had another relapse by then ! Ah well, it might provide more evidence for the scanner to pick up on : ))

I try not to worry too much - what will be ,will be.. After my initial shock and upset I have decided to work with my new 'crappier' ! level of function and focus on ways to adapt and work around it to achieve my goals. One biggie has been the stick - I have a love/hate relationship with this, after I got totally stick free and back to work after 6 months, last time. Massive resentment that I get so little use from legs before needing it now but recognise that it allows me to be on my legs safely, less painfully and tiringly for much longer - I can get further, do more and it helps to normalise my drunken stagger and fatigue induced leg buckling problems in public! Stick = friend, safety and increased ability , in spite of being a symbol of disability : )

Kind regards,

Angela x

[VivienneWaterworth in reply to angelite]

Hi Kerry and Angela

This FND can be a very debilitating disorder and extremely frustrating to handle while waiting for a proper diagnosis. Even then, traditional scans do not show anything at all being wrong with you, so please don't pin your hopes on that furfy...it will only lead to disappointment.

Meanwhile there is a LOT you can do to take control of your own health. It is a very good idea to print out the brochures at

fndhope.org

and give them to your doctor and any other health professionals you see. The brochure outlines current thinking about this disorder and debunks some very abusive and out of date beliefs that have been taught to just about every health professional until the last 2 or 3 years...ie just about all of them.

There has been a complete turnaround in thinking by neurologists in just the past couple of years, so most medical people need to brought up to date. The best website for this is:

neurosymptoms.org

which has been put together by Dr Jon Stone in Edinburgh, one of the top 3 neurologists in the world with respect to FND.

There are two tests which positively identify FND, one for people who's hand(s) shake and the other for leg weakness. Your doctor can perform the Entrainment Test (for hand shaking) and the Hoover Test (leg weakness) on you. They are very simple tests to perform and will give you the peace of mind that you do or don't have FND, and if you do, there is absolutely NO need to continue with more and more brain scans. One will do to rule out most other conditions.

The other important ways you can take control of your own health situation is to ask your doctor for referrals to:

Physiotherapy - so you don't lose muscle strength in the affected legs etc, and they may be able to teach you how to walk slightly differently so you are more stable

Meditation and relaxation techniques - are often helpful for you personally though they may or may not make any difference to your symptoms. Whatever, they should make you feel a bit better at the very least.

Psychology - to help you cope with the new limitations in your life, to help you to identify triggers that produce symptoms, and to retrain your patterns of thinking to reduce symptoms.

This is a tricky area. In the past, it was assumed that we all had a history of trauma that produced our symptoms, and/or that we were faking our symptoms. This is no longer current medical thinking, but as I said earlier, this is all very new and the neurologists are now recognising that only 2/3 of us have this history...so why are the other 35% getting symptoms when there is NO history of trauma or abuse.

It seems that trauma includes physical trauma to the body, e.g. accidents, illness, infections, surgery, some medications, etc. For me it also includes cramps and restless leg symptoms and an overactive adrenal system/sympathetic nervous system from jobs where I had to be on full alert all the time (this phenomenon also includes people who work in call centres, with the very young, the elderly, health care professionals and others in high stress jobs)

They say this condition is a software problem, not a hardware problem that shows physical evidence in scans, e.g. epilepsy, MS, MND etc. It seems that our brains are sending messages the wrong way around our brains, so if we send a message to move a leg, for example, the message gets highjacked and somehow ends up in the emotional centres of the brain, often causing us to appear emotional, and sometimes the messages never make it to the motor sections of the brain, or perhaps only a small number of the messages end up in the right place.

The other frequent cause of FND symptoms can be:

Vitamin B12 levels in the lower than mid-range levels (even if they are above the suggested minimum levels);

Folic Acid, Vitamin K and other B vitamins being too low;

Magnesium deficiencies (my doctor has me self medicate from 3 to 8 (yes, EIGHT!!!) big tablets a day (variety of brands), and if that doesn't produce diarrhoea, the symptom that shows you are absorbing enough, then take an Epsom Salts bath to get the Magnesium absorbed through the skin);

Imbalances in the Adrenal, stress and HPA hormones. This is a complex area but your doctor can run tests on these to ensure that everything is in balance, and if not, refer you to an endocrinologist. There is an interesting chart at the bottom of the Wikipedia page on Moxonidine (similar to Clonidine) at en.wikipedia.org/wiki/Moxon...

Other medications can also cause FND symptoms. Some of these minimise symptoms for some people and make them much worse for other people. Included in this are SSRIs and SNRIs. They give me severe jaw clamping and muscle tightening, which in turn triggers seizures for me.

Gluten sensitivities are a well known cause of FND symptoms. Gluten sensitivity symptoms can be significantly worse than a mere celiac reaction, and regularly affect people for several days or weeks. I know people who go to hospital for 2 weeks after consuming the amount of gluten in the coating on frozen potato chips! I am only ill for 3 days, but I show NO signs of any gluten problems in blood tests.

There appears to be a significant number of people who have both functional symptoms and organic symptoms that are similar. Why? No-one really knows, but I wonder whether it could be the subconscious mind's way of trying to get medical help for an undiagnosed condition.

I hope that this might help your medical professionals understand this condition a bit better.

[angelite in reply to VivienneWaterworth]

Hi Vivienne,

Thanks for your info. I am well read and know the the difference between functional and neurological signs, in a physical test. I do not exhibit any functional signs now but did have some for 6 1/2 weeks during first attack 3 years ago. They morphed into more classic neurological signs for the next 3 months. I was left with hyperreflexia and spasticity, tinnitus and memory/concentration probs. I also have co contraction, flexor spasm and more recently some extensor spasm since my relapse in October. My white cells have been elevated during both episodes and my lymph nodes raised toward the end of the attacks.My original scan was 2 days into illness, over 3 years ago now. I was not given another scan after it became clear I had permanent deficits from the first attack but an EEG showed slowed waves at 10 months. No further tests were performed, Encephalitis and MS were not ruled out. I was refused physio by the neurologist ( not given a reason ) but offered anti spastic drugs which I declined, as I felt I was managing with reduced working hours and did not want to contend with any side effects that might put me off work ( It took me 6 months to get back to work ). My deficits remained steady for 2 1/2 years until the UTI/sepsis flared everything up again. Was pretty ill, with buzzing, numbness, weakness, thermostatic probs, blood pressure drops,balance issues etc for 2 months, many of the symptoms I experienced from later on the first time round but no stiff neck, myoclonus, movement disorder or motor fits this time, thankfully ! Spasticity kicked in again after 2 months of weakness, enabling me to regain some power and take my weight better. I plateaued out in recovery around 3 months and have stayed at this level, with additional spasticity, worse balance, temp control, sweating, vision,fatigue etc. I have done my own physio, like last time, since I have had no help again. Psychology could not find any problems 3 years ago. Perhaps you are right and nothing will show on a scan but at this stage, due to the circumstances, duration and content of the attacks and since it appears that they leave me with progressive neurological disability, I hope you will understand why I feel I would really like the opportunity to have further investigation.

Kind regards,

Angela x

[VivienneWaterworth]

Hi Angela. Wow, you have certainly had a lot of issues over the past few years. Most people aren't as aware as you are of the technical labels of what's actually going on with their bodies. I'm concerned that your symptoms seem to change over time. That doesn't normally point to an organic cause but more of a functional cause.

I don't have a medical background, but I have been 'medicalised' with the large number of weird, unusual and 'rare' disorders and illnesses I've had over the past 41 years and also experienced by others in my family. We don't seem to get normal stuff (my gall bladder removal last week is about the most normal thing I've had go wrong in many years, other than coughs and colds!)

Anyway, I hope you can find answers to your issues. Check out some of the chemical imbalances that can cause some of these symptoms, especially B12. Anything lower than the middle of the normal range has been shown numerous times with people I have met on Facebook to cause weird neurological issues that go away with supplementation. Also see what happens if you supplement Magnesium as it is food for muscles and nerves, and with all the muscle involvement you are having, it really seems like it could help you.

All the best.

[angelite in reply to VivienneWaterworth]

I'll admit my case is complicated, Viv !

There is a possibility that I had Encephalitis/ ADEM following 2 simultaneous viruses that knocked me silly ( stiff neck, psychogenic movement etc - classic psychological symptoms of Enceph ) that morphed into a more classic MS attack, after I was sent home, sparked by the systemic infection.

The second time was more simple : Uti, sepsis, systemic infection appearing to spark another attack of the MS type symptoms. I also managed to get pneumonia one time from a simple cold ! It appears that my immune system is rather pants !

My ( confirmed ) hypereflexia and spasticity symptoms do not appear anywhere on the neurosymptoms website- true spasticity is not a functional disorder . A typical feature of damage is flaccidity ( extreme weakness ) just after the damage occurs, followed later by the development of spasticity, when signals regroup and attempt to form a new but hypertonic compromise. I recognise these 2 distinct periods in myself, during both attacks/recovery. It is a painful and limiting condition, at this point. I would like to know the cause if possible !

All my vit/mineral tests check out fine, although I take a supplement anyway, as a little insurance : )

If it turns out this is not organic I will be more than happy - the alternative has many unpleasant implications . x

[VivienneWaterworth]

My tests for B12, gluten and magnesium all come out as normal, normal, normal however I get quite significant visual problems whenever I stop taking B12 tablets daily, I am ill for 3 days after eating most brands of frozen chips from the supermarket as they usually contain gluten in Australia, and I have a very severe magnesium malabsorption issue and take 3 to 8 big magnesium tablets daily, depending on how much use the muscles get.

If I have a seizure I immediately take an extra 1 or 2 magnesium tablets, both to prevent the muscle damage from the seizures and to help heal the damage that does occur.

I don't lose consciousness with my seizures, but they consist of quite violent muscle contractions and/or wild movements that can last up to 5 hours or more. Think orgasm without the pleasure, centred in any muscle or nerve ending, e.g. half way down my right forearm, and with the violent movements/contractions occurring in the other arm, or my chest or head or legs. A centre that controls the movements, plus the movements/expression of the seizure elsewhere and being controlled by the centre. Weird, but that's the best way to explain them.

So, my doctor doesn't bother with those tests any more because they are all normal. Every time I mention muscle weakness, cramps, tight ropes, muscle damage or pain in my muscles, he asks if I have diarrhoea yet. If I don't, he says I'm not getting enough magnesium so take more, take more, or have an epsom salts bath.

Curiously, he gave me Epilim (low dose epilepsy medication) for nerve compaction pain in my shoulder and it can help to break the cycle of nerve irritation causing muscle movement causing nerve irritation. It also gives me a really good dose of dementia if I take more than 400mg a day, so I use it sparingly.

I hope you can find the answers you are looking for...and remember that normal test results are not always normal for you. Your normal range can be very different to other people's normal range. Mine certainly are.

[angelite]

Hi Viv,

Could you be gluten sensitive rather than gluten intolerant ?beyondceliac.org/SiteData/d...

Has dystonia for muscle symptoms been ruled out ?nhs.uk/Conditions/Dystonia/... ( paroxysmal )

As you may have guessed, I am a sceptic regarding FND. True conversion disorder is a rarity : for many given this label, I believe there is an organic or physiological cause that has yet to be diagnosed. Regarding MRI - it is good but not God. Contrast dye is recommended for suspected inflammatory conditions : not used in my case, nor in many others, from what I have read. It would almost seem like a waste of time, to look for something without the appropriate medium being used. There are stories from people I have read about on here, whose background and symptoms put medical red flags up for specific conditions that ought to be considered, yet doctors either appear not to make the link or choose to take the easy alternative and put down as FND, saving time and money on investigations or in some cases, possibly covering themselves when mistakes are made.

There are many neurological and physiological conditions that are diagnosed by clinical symptoms only, as no evidence shows on scans and equally many that take time and progression before scans will show changes. I am not suggesting that everyone should assume the worst, when they experience neuro symptoms but would suggest that we educate ourselves, take note of any relevant positive test results, patterns/correlations in symptoms and keep an open mind.

Take care,

Angela x

[angelite in reply to angelite]

beyondceliac.org/SiteData/d...

nhs.uk/Conditions/Dystonia/...

Not sure why links didn't work first time but got there finally : ) x

Laptop FND ? ! : ))