Hi everyone

I just wanted to ask those with much better knowledge than me on something that I have been wondering since my last Neuro appointment, and unfortunately I don't have another one in the diary at present.

Just for context, my query is in relation to this wording from my Neuro on current diagnosis:

The working diagnosis here is that of a post-infectious neuropathic syndrome which seems to affect small fibres and to a lesser extent large fibres. These are functional abnormalities as structurally the nerves are normal, neurophysiologically. (Detailed neurophysiological studies looking for abnormalities of large fibres but also small fibre were normal. )

My impression is this is a monophasic type illness and should resolve with time.

So I *think* it sounds like my ACTUAL nerves are fine and there is no damage, so if this is a functioning issue, does this mean what he is describing is akin to functional neurological disorder? Functional neurological symptom disorder: Symptoms and treatment seems to explain it well.

I have read all about myelin sheath, axons, etc. but now wondering if these areas are not actually an issue.

It's all very confusing as he has mentioned neuropathy which I thought was damage/inflammation. I am taking a bunch of supplements at the moment and wondering whether it's actually worthwhile if structurally everything is alright.

Both neuros I've seen have told me what I have should resolve with time, but it's been 7 months now and it seems like a long time to me....

Probably slightly more sensitive to it after having a pretty torrid weekend with pins and needles all over, especially my face. That was after having 1-2 really good weeks with very reduced flare ups.

Thanks in advance!

I am very skeptical of the diagnosis of conversion disorder. I cannot speak for the UK, but in the United States it is diagnosed mostly in the south and very rarely in the north.

From personal experience, a guy i worked with , his wife just suddenly started experiencing many neurological symptoms. literally overnight. They had moved upon his retirement from new york to north carolina. After testing she was diagnosed with conversion disorder. She was given psychological therapy over the course of years, however she kept getting worse. I kept telling him, after researching, that she has symptoms of a stroke.

Finally after years of no progress, he took her up to a hospital back in new york It turned out she had had a stroke. Unfortunately the window of time in which she could have beenhelped with the proper treatment and therapy for stroke was wasted on that conversion disorder diagnosis.

It seems to be a diagnosis they grab hold of when they have no idea what is actually going on.


Have you had testing for small fiber neuropathy?

The working diagnosis here is that of a post-infectious neuropathic syndrome which seems to affect small fibres and to a lesser extent large fibres. These are functional abnormalities as structurally the nerves are normal, neurophysiologically. (Detailed neurophysiological studies looking for abnormalities of large fibres but also small fibre were normal. )

My impression is this is a monophasic type illness and should resolve with time.

Good morning Leeds,

I just wanted to thank you for sharing very personal information on this thread and the last. I have found those details and your insights very useful. Thank you.

The problem with this working diagnosis is that explains everything and it explains nothing. Neurology and Neurophysiology are in their infancy. You can have all the fancy measurements you want but the same blunt treatments are the identical whether you had the tests or not. Gabapentin and Pregabalin. And these only treat the symptoms, not the cause. So they've taken these measurements but they can still only hypothesize as to the cause and hope that the body spontaneously recovers over time.

Until they discover the mechanism of recovery then Neurology is just a sticking plaster. I suspect your Neurologist's caseload is full of working diagnoses.

I'm not one of the cleverer people whom you hoped to reply ( have you considered a personal message?) but my thoughts are this :-

Continue with your supplements, you want to maintain an optimum nervous system. Consider a diet that maximises oxygen perfusion. Consider intense exercise like heavy weights. Consider cryotherapy/ Wim Hoff cold showers. I did this for a couple of months during lockdown, and wow I have never been more aware of my nervous system. These things may help to promote recovery.

I wish you well and thanks again for sharing.

Atty

Leeds lad,

Starting to believe mines may be similarly related, I.e. a functional related issue.

My symptoms came on last year at a time I was going through an awful lot in my life. Mainly anxiety, through job/professional chartership interviews, young family, other hobbies which may induce anxiety. I'm not an overly anxious person generally at this point in my life, but in certain circumstances I can be.

The only other cause at this stage (Outwith any findings through other tests that I may go through) may be the folate deficiency. I had a similar episode with a chronic headache 7 years ago, where I was also low in folate. So a few times I've been put on 5mg folic acid to correct deficiencies. I had some neurological issues at this point as well, however it lasted around 3 months and totally disappeared. I don't exactly know whether or not the folate is a reason for my current symptoms. I was out through 2 three month courses of folic acid, but nothing seems to have improved.

Other related points to note, I've had neurological issues before throughout my life. I was a child bedwetter up to my teens, which was a total nightmare. I also suffered from facial flushing, which occurred through an element of social anxiety. I did manage to overcome this around age 23/24. My mother has fibro, again a family link to a functional neurological illness. Just trying to put the puzzle together to see if I can get an answer.

Wonder if you, or anyone else has a story of similarity, or anything else which they can put together to come up with a potential cause.

Hi there. I have another thread where I've described my journey, and I have had testing for small fibre neuropathy but everything came back normal.

Hi Atty

TBH, most people on this forum are more aware of this topic than me, so any replies would have been welcome!

I am continuing with supplements, and the gym has always been my go-to as soon as it opened. I do weights 5 times a week and generally am pretty healthy. I have actually started the cold shower stuff after reading your suggestions too! Thank you.

Hi Blueboat

I can't really point to any life events which preceded this. As I've put in my story (there is a seperate thread if you want to have a look), this came on acutely after I'd overcome a horrible respiratory/flu illness and my neuro has diagnosed what I have as a post-infectious neuropathic syndrome and thinks it will resolve with time.

What I can say with some kind of assurance is that in the early months when this all started, I am 100% sure I made it worse. I was sick with worry and convinced myself I had MS, was googling every single day about things and working myself up into a frenzied state which resulted in panic attacks. It was a horrible time, and I kept repeating the cycle and still do, albeit to a much lesser extent.

I have been lucky to be healthy all my life and haven't really ever suffered from stress or anxiety apart from the normal day-to-day things which we all go through, but I do think this particular 'disease' has induced a lot of it and probably heightened symptoms and slowed down any recovery.

Pretty much the same scenario in my story with regards to health anxiety. I've calmed down an awful lot since then.

It is certainly not the way to help yourself if you cant get yourself out of the psychological cycle.