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Neurologist's diagnosis of Functional Neurological Disorder and referral to http://neurosymptoms.org


FunkyBaboon
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Hello all,

 

I suspect that if you live in the UK and you ever visit a neurologist presenting symptoms of autonomic dysfunction as a result of the iatrogenic damage from antidepressant withdrawal then you'll likely be given a diagnosis of Functional Neurological Disorder and be pointed at the following site:

 

http://www.neurosymptoms.org/

 

Personally, I presented with a whole bunch of neurological symptoms that at the time I was concerned might indicate that I had some kind of disease like MS or cancer so I wanted to get checked out. The neurologist examined me and didn't think that I had any kind of disease but to put my mind at ease ordered an MRI of my brain so that I could get conclusive proof that I didn't have any of the diseases I feared. The MRI came back clear showing that my brain structure was completely normal and there was no evidence of any physical disease. This led to the diagnosis of Functional Neurological Disorder, which seems to be a fairly broad term to describe any neurological condition that a neurologist cannot explain given the absence of disease.

 

There are a whole bunch of possible neurological symptoms that come under this umbrella term such as weakness, numbness, phantom pain or blackouts and they are confirmed as being real and not imagined and are due to a problem with the functioning of the nervous system and not due to neurological disease. A great analogy on the site is:

 

If you were a computer its like having a software problem rather than a hardware problem. If you have a software bug on your computer, it might keep crashing or work really slowly. You wouldn't solve that problem by opening up the computer and looking at the components.  You wouldn't see anything if you did an x-ray of that computer. 

 
You'd have to solve it by reprogramming the computer, working out which programs were causing the problem.
 
Human beings are obviously more complicated than computers. Our thoughts, behaviour, sensations and emotions are our programs.

 

Interestingly, the author does not mention drug induced iatrogenic damage as a possible cause of these symptoms. Altostrata mentioned that she had contacted the author of the website to let him know about the possible iatrogenic origins of these disorders. Instead the author limits his explanations of the cause of these symptoms to biological, psychological and social indicating that genetics, neuroendecrine changes, personality traits, previous experience of depression & anxiety, health anxiety about symptoms and stressful life events are the sole causes of these kind of neurological malfunction.

 

I think that awareness of drug induced neurological malfunction needs to be raised in the neurological profession so they can ask patients the right questions to establish their medication history and suggest the possibility that drugs they've previously taken could have caused the neurological issues they are experiencing. Maybe even point patients in the direction of a site like survivingantidepressants.org so they can get the necessary advice on reinstatement and slow tapering.

A convenient link to my introduction post

 

2003 Paroxetine (20mg I think) daily for 5 months due to extreme anxiety before final exams and stopped cold turkey. From 2003 onwards I have suffered with extreme anxiety, akathisia, severe muscle tension & digestive problems whenever off I'm off anti-depressants.

2007 Clonazepam (unsure of dose) - took approximately 100 tablets to try and self medicate for anxiety.

2007-09 Amitryptyline 10mg - was advised to take this "as and when needed" for anxiety.

April/May 2011 Diazepam 2mg - 2 week course followed by complete inability to sleep upon finishing so started Citalopram 40mg and I was able to sleep again.

Mid 2012 Diazepam 10mg - took approximately 100 tablets.

Mid 2012 Started Citalopram taper - 5mg reductions every month or two, severe withdrawal symptoms throughout taper.

Apr 2013 Completely off Citalopram and continued to have severe withdrawal.

Oct 2013 Completely fell to pieces mentally and alongside had a whole host of debilitating physical symptoms too. I went to the doctors who performed whole batteries of tests but had no idea what was wrong with me. They tried me on Sertraline and Amitryptyline to which I had terrible reactions which made symptoms worse. Eventually got put on Nortryptyline 25mg, which I tolerated and over 3 months withdrawal symptoms started to abate.

Mid 2014 discovered survivingantidepressants.org and hallelujah! I knew what was wrong with me - slow taper FTW!

Late 2014 & 2015 Reduced Nortryptyline 22.5mg & 20mg respectively in November & December of 2014. In 2015 Tapered Nortryptyline from 20mg to 10 mg in 2mg increments. Withdrawal symptoms with each dose reduction are debilitating but in a much different way to Citalopram.

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I have corresponded with Dr. Jon Stone, the author of the site, about how iatrogenic effects should be included in causes of Functional Neurological Disorder. His response:

 

the point you make is correct but is also true for patients who may have MS, B12 deficiency and a host of other neurological or psychiatric diagnoses. To describe all of them would be to recapitulate a whole textbook of neurology and psychiatry

I have commented a bit on that (Misdiagnosis page) but the responsibility is on doctors to make the correct diagnosis.

 

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • 2 years later...

I have weak-feeling legs, with tight muscles as though they are on the verge of cramp - have had this for over a year since I had a physical breakdown and need walking sticks to get around, some days I wonder if my legs will hold me up.  There's also very limited energy available, I may be able to walk a reasonable distance, or do 20 minutes weeding but then I am shaking and need to rest for quite a while and sometimes fight off dozing (if I doze I wake with a jolt and feel dreadful).  I have had a CT scan and EMG tests and the neurologist has diagnosed Functional Neurological Disorder.  I pressed and pressed her about the damage I've experienced from a-d drugs and could this be a result.  In the end she said "it sounds like those pills were not good for you and may have done this" (words to that effect).  I see on her report to my Doc. and Pdoc. she has said I insist I am not depressed and think that the drugs have caused this.  I have been discharged by my PDoc (who said the leg weakness was a somatic manifestation of my condition - he diagnosed me as having major depression with agitation when I was in a huge wave from being wrecked by a-d prescribing and in 24/7 "chemical" anxiety" and dismissed any idea that the drugs could have caused such a condition).  I will see my regular Doc. on Tuesday, who does seem to have acquiesced somewhat to my insistence that the drugs have damaged me, and talk further about the FND diagnosis.

 

My concern is if it will ever get better.  Some information says no, some says with physio and CBT it could improve.  I did start researching through the internet but have decided I don't want to spend hours trying to find a fix - I've done mega-hours of that already on the harms that a-ds can cause and just don't think I can join yet another support group at the moment - it all gets too much.

2006 Citalopram 20mg on and off to 2013.  April 2013 - July 2014  Sertraline, Venlafaxine, Fluoxetine, Mirtazapine v. bad reactions. July 2014 - CT Mirtazapine.  July 2014 - February 2016 Medication free, long term w/d.  February - July 2016 Fluoxetine.  Medication free, long term w/d syndrome.  2017 Jan physical breakdown.

2017 February - March Escitalopram, Nortriptyline instated.  Lorazepam, Zopiclone PRN.  April 2017 Lithium Carbonate 250mg 1 wk. 14 August 2017 finish cross to Diazepam 22.5mg daily, stop Zopiclone

Tapers:

Diazepam 

2017 21 August - 21.25mg down to 30 Dec - 14.5mg 2018 6 Jan - 11 May down to 12mg.  2 June updose to 12.25mg - holding. 2019 (0.5mg cuts) - 12 Jan 12mg to 28 Dec down to 10mg 2020 (0.25mg cuts) - 25 Jan 9.75mg to 29 Dec down to 6.25mg 2021 Doses at 5.30am and 6pm (different quantities) **May have bungled dose and accidentally took 1mg more for about a month (approx 7.25mg), so 4 Jan started again at 6.5mg; 19 Jan 6.25mg; 1 Feb 6.0mg; 23 Feb 5.75mg; 9 Mar 5.5mg; 23 Mar 5.25mg; 9 Apr 5.0mg; 6 May 4.75mg; 13 May 4.5mg; 6 Jun 4mg; 12 July 3.5mg; 2 sep 3.0mg; 15 Sep 2.5mg

Escitalopram Dose at 9.30am - 10mg (tried twice to reduce by 0.1mg, got spooked by extreme fatigue and depression both times, back to original dose)  

Nortriptyline  2018 Dose at 8.30pm 90mg to 2020 1 Dec down to 72.5mg; 2021 20 May 70mg; 8 Jun 67.5mg; 24 Jun 65mg; 31 July 60mg; 12 Oct 55mg

 

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