Signs indicating incorrect diagnosis of Functional Neurological Disorder?

Busson

Busson

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I want to make a case to my GP for not having a Functional Neuological Disorder and instead get him to organise some specific physical investigations.

I'm in the UK, so I can't easily access different medical approaches if my GP isn't willing

I believe I have a physical cause for my symptoms (I won't go into it here) and would like to ask for help to identify what signs and symptoms are not usually found in FND.

For example -- Do FND symptoms typically worsen (or improve) with age? Are they usually late or early onset? Are symptoms like ear ache unlikely to be from FND? Are delirious states of inattention typical of FND? Any discussion on matters like these would be very useful.

Thank you in advance.
 
Learner1

Learner1

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Busson said:
I believe I have a physical cause for my symptoms (I won't go into it here) and would like to ask for help to identify what signs and symptoms are not usually found in FND.
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What symptoms or tests did you have that caused this doctor to diagnose you with FND? What symptoms do you have? What kinds of tests have been done on you?

You might look into the US Institute of Medicine / National Academy of Sciences 2015 report on ME/CFS, and titled beyond ME/CFS. They have diagnostic criteria in there, and you might see if you fit it. You might also note the introductory areas where they explain that ME/CFS is not a psychiatric illness. It does involve the neurological system, the immune system, and endocrine system among others.

As for neurological issues, many of us have some form of postural orthostatic tachycardia syndrome, a subset of dysautonomia, that is typically autoimmune. A neurologist could check into it by doing tests like our described here;

https://www.neuroassociates.us/autonomic-test-preparations.html

And, an immunologist could run antibody testing, immunoglobulin testing with subclasses, and tests for various viruses and bacterial infections - many herpes family viruses have been linked to ME/CFS, especially Epstein-Barr and HHV6, and recent research has shown that they don't have to be fully active to be causing mitochondrial fragmentation and loss of energy production.

Furthermore, many patients have experienced issues with thyroid and adrenal function, so testing beyond TSH, like free T3, free T4, reverse T3, and thyroglobulin and TPO antibodies, as well as a 24-hour saliva cortisol test might be useful.

Any doctor can order tests, and do referrals, in the interest of helping the patient. One of the fallacies of the UK NHS system, is patients feel that they can only see doctors within it. Here in the US many of us go outside of the mainstream system and pay out of pocket for doctor visits and testing that are not covered by our insurance. From what I understand, this is possible in the UK, and though it's expensive, it can provide the answers you need to understand what is going wrong, what can be treated, and what those treatments might be. But you need good data first.

It is unfortunate that the medical system is so bad at dealing with patients like us, but that is the reality in most places today. So, asking questions, as you are, is very wise, and thinking of creative ways to get testing to find treatable problems is useful, and not to be labeled by some untreatable label that prevents you from getting the treatment you need to get better is important.

Best wishes...
 
Mohawk1995

Mohawk1995

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My understanding is that Functional Neurological Disorder is a diagnosis based on exclusion of other disorders and the clinical presentation (symptoms) of the patient. Meaning tests are mostly if not completely negative. And the patient presents with symptoms that fit a dysfunction neurologically (ie muscle weakness, unusual sensations, cognitive issues, fatigue, black outs, seizures, etc...). It sounds like this at one time was the same as "conversion disorder" which is deemed to be psychologically based (and not a particularly useful diagnosis when trying to explain it to a patient). The more modern view is that it is a neurological dysfunction with different types of presentations that have a similar pattern and are not under the direct control of the patient (ie physiological).

So with my training and experience as a Physical Therapist, I of course have a view on this. Even more so, having a son who has suffered with ME/CFS and a wife who suffers with Polymyositis I have an expanded view of this.

First and foremost, to me this diagnosis and the description of it is an attempt to define something for which we do not have a complete understanding of. Also I look at it not as a specific diagnosis, but as an "umbrella" diagnosis under which many other disorders may fit. I do not see it as a bad thing to have this diagnosis, but if used to over-simplify a person's condition it could be very problematic for actually finding an effective treatment approach. In my thinking (neuro-protective, neuro-immune) the following could be considered under this umbrella:
  • ME/CFS
  • Fibromyalgia
  • MCAS
  • Syncope (with negative cardiac workup)
  • Non-epileptic Seizures
  • Some forms of Chronic Pain
  • Systemic Sensory Problems
  • Some forms of Gastro-intestinal problems (autonomic dysregulation related)
  • Post-Concussion Syndrome
  • PTSD
  • others?
Because it is a Neurological Dysfunction by definition, you could have early or late onset. It could get worse or better. Also you could have any number of symptoms (which are actually neurophysiological warnings) that may not be related to a specific acute disease or dysfunction in the body (other than the neurophysiological dysfunction).

Even so, my thinking would be that you would want the most specific diagnosis possible while respecting that it is part of a continuum of diagnosis and presentations fitting under the same umbrella. Meaning you could have a different but similar presentation with someone who has the same diagnosis. If you fit all of the features of ME/CFS, in my thinking that should be what is determined. I am not a doctor so I do not claim to make a diagnosis. Just my thoughts.
 
leokitten

leokitten

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If you are here and think you possibly have ME, do you have the hallmark symptom of ME, post-exertional malaise (PEM), aka post-exertional neuroimmune exhaustion (PENE), aka post-exertional symptom exacerbation (PESE)?

Without a doubt you really would know if you have it, because its generally intense, floors you even if you were an Olympian before, and it happens after most exertion, i.e. simply living your life like normal will cause it.
 
leokitten

leokitten

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kangaSue said:
Elevated d-lactate level is known to occur in some people with ME/CFS and this can lead to development of neurological issues.
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It’s common across the board with ME to have a number of neurological issues and symptoms (ME is primarily a neurological disorder) even without any evidence of d-lactate, in fact a disease that has similar symptoms as ME but is generally a differential diagnosis is d-lactate acidosis. But each disorder is distinct. People with d-lactate acidosis will improve with proper treatment, but people with ME will generally not improve with the same treatment.
 
Learner1

Learner1

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leokitten said:
It’s common across the board with ME to have a number of neurological issues and symptoms (ME is primarily a neurological disorder) even without any evidence of d-lactate, in fact a disease that has similar symptoms as ME but is generally a differential diagnosis is d-lactate acidosis. But each disorder is distinct. People with d-lactate acidosis will improve with proper treatment, but people with ME will generally not improve with the same treatment.
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The 2015 IOM Report which reviewed over 9,000 papers found that ME/CFS is a multi-organ system disease, and is not primarily a neurological disorder, even though many patients have neurological symptoms. several recent researchers have found that there are several subsets of ME/CFS patients, so making some broad-based statement about all ME/CFS patients is likely not accurate.

People with ME/CFS can improve with various treatments, depending on the ideology of their case of ME/CFS, their disease drivers, and their subset of the disease. Some of these patients also have d- lactic acidosis, and would likely have a good response to treatment that treats that, rven though they may also have symptoms of ME/CFS.
 
leokitten

leokitten

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Learner1 said:
The 2015 IOM Report which reviewed over 9,000 papers found that ME/CFS is a multi-organ system disease, and is not primarily a neurological disorder, even though many patients have neurological symptoms. several recent researchers have found that there are several subsets of ME/CFS patients, so making some broad-based statement about all ME/CFS patients is likely not accurate.
Click to expand...

Yes you are right, when I was writing that post up I was thinking what parts drive the core ME symptoms (fatigue, PEM, neurological, cognitive, sleep, pain)

Learner1 said:
People with ME/CFS can improve with various treatments, depending on the ideology of their case of ME/CFS, their disease drivers, and their subset of the disease. Some of these patients also have d- lactic acidosis, and would likely have a good response to treatment that treats that, rven though they may also have symptoms of ME/CFS.
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@Learner1 I thought it was understood that I wasn’t talking about people who have both distinct comorbid conditions, sure if you have two distinct diseases where one can contribute to symptoms in another, it is a good idea to treat each one. I was talking about people who only have one or the other. If you have ME/CFS but no diagnostic evidence of d-lactic acidosis (which a doctor can diagnose with eg carb challenge and other tools), it’s very likely not going to help your ME symptoms to treat as if you had d-lactic acidosis unless by total coincidence a treatment has efficacy for total different reasons.
 
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Busson

Busson

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104
Learner1 said:
The 2015 IOM Report which reviewed over 9,000 papers found that ME/CFS is a multi-organ system disease, and is not primarily a neurological disorder, even though many patients have neurological symptoms. several recent researchers have found that there are several subsets of ME/CFS patients, so making some broad-based statement about all ME/CFS patients is likely not accurate.

People with ME/CFS can improve with various treatments, depending on the ideology of their case of ME/CFS, their disease drivers, and their subset of the disease. Some of these patients also have d- lactic acidosis, and would likely have a good response to treatment that treats that, rven though they may also have symptoms of ME/CFS.
Click to expand...

I am sorry I have not been well enough to reply since I started this thread. I had quite a bad downturn at short notice. I found the IOM Report interesting and it gave a few symptoms of the sort I was looking for although they were mainly symptoms of inclusion (for a diagnosis of CFS/ME) rasther than exclusion(of Functional Neurological Disorder). Thank you all.
 
S

SnoozeQueen

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Busson said:
I want to make a case to my GP for not having a Functional Neuological Disorder and instead get him to organise some specific physical investigations.

I'm in the UK, so I can't easily access different medical approaches if my GP isn't willing

I believe I have a physical cause for my symptoms (I won't go into it here) and would like to ask for help to identify what signs and symptoms are not usually found in FND.

For example -- Do FND symptoms typically worsen (or improve) with age? Are they usually late or early onset? Are symptoms like ear ache unlikely to be from FND? Are delirious states of inattention typical of FND? Any discussion on matters like these would be very useful.

Thank you in advance.
Click to expand...

I am having a similar problem. Neurologist wanting to diagnose FND without any clear or coherent explanation of why.

I had a negative hoover’s test by neurologist and according to the website FND diagnosis (www.neurosymptoms.org) MUST be a positive one not merely ruling out everything else. I argued this point At length with the neurologist who Eventually agreed that he wasn’t sure and agreed to refer me for a second opinion.
I didn’t recognise myself or my symptoms on the neuro symptoms website and am engaged in trying to find alternative causes of my sudden onset ataxic gait and slurred speech. These are episodic in nature. I already had Progressive ME/CFS For 5 years before these new symptoms began, which I believe were the result of a Covid infection in March.

frankly I’m going around in circles trying to get referred for suitable treatment and rehab. 10 months in, no physio or speech therapy. I have videos of my speech and gait if they are of interest.
 
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kangaSue

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A BH4 (tetrahydrobiopterin) deficiency can cause similar neurological symptoms in some cases. I can't recall what paper I got the following paragraph from for my file on BH4 deficiency, but it's interesting to note it can be an issue without a toxic build-up of phenylalanine;
[Due to its vital role in the conversion of L-tyrosine into L-DOPA, which is the precursor for dopamine, a deficiency in tetrahydrobiopterin (BH4) can cause severe neurological disorders unrelated to toxic build-up of L-phenylalanine; dopamine is a crucial neurotransmitter, and is the precursor of norepinephrine and epinephrine. Thus, a deficiency of tetrahydrobiopterin can result in phenylketonuria (PKU) from L-phenylalanine concentrations or hyperphenylalaninemia (HP A), as well as monoamine and nitric oxide neurotransmitter deficiency or chemical imbalance. ]

Treatment with levodopa has been beneficial in some patients. I have seen mention recently that in the odd case, some people with ME/CFS are getting good symptom improvement with Kuvan too, something that can also address a BH4 deficiency, but not easily accessed in many countries without having actually having PKU.
https://www.healthrising.org/blog/2...-ganglia-chronic-fatigue-syndrome-treatments/
 
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