Firstly I must stress that I didn’t feel as though I was in the right department yet again. This wasn’t a person filled with autoimmune Illness knowledge but he really was a gentleman. A good looking one at that too 🥰
Going through my list of symptoms he said small fibre neuropathy. I’m not sure if that’s it and that’s what I have , I hsd bloods taken but He didn’t say I needed further investigation for this . Is this normal?
My mini fireworks internal displays actually do seem quite fitting as it all started with burning in my feet. 🧐
I’m really bad at listening when I can see someone is listening to me. He did mention something to do with my left leg compensating both legs. Again he explained it, im sure if I remember correctly it was something to do with nerves but not the main nerve frame the ones that cause severe numerological disorders.
His now referring me to a neurophysiologist as he can see I’m am not only sick but exhausted from being sent here there and everywhere and not been on proper medication which quite frankly is driving me insane in all aspects. I loved the fact he didn’t even question my mental health in a way that would come across as me having health anxiety 😊
He noted sores on my hands and extensive livedo and will now write back to Rheumatologist and state the importance for me to be on medication.
All in all it was an ok appointment.
Xx
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Lisalou19
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Hi LL. This is a great update thanks. Glad dishy neurologist was so nice and helpful. I’d swap him for any of the 3 I’ve had cheerfully!
When he was explaining this to you I think he was trying to say that it’s either length dependent or non length dependent - the latter being more unusual and more associated with Sjögren’s, Lupus and CTDs than say Diabetes - which is the biggest cause of SFN and always length dependent ie starts in feet and slowly moves up into ankles but won’t affect hands, arms, face as mine does.
He means that the neuropathy is not coming from the brain but from the independent small nerve fibres that make up our bodies - which send signals to the autonomic nervous system. When these tiny nerves are disrupted or even destroyed by an underlying process - sometimes autoimmune sometimes nothing they can find - they can cause issues with our proprioception.
Proprioception is what helps us keep our balance and maintains our sense of spatial awareness and stops us walking like a drunk. So if the tiny nerves are disrupted or die our brains struggle to make sense of the messages they are receiving or not receiving. In my case for eg it has altered my sense of taste and smell and hearing and my ability to tolerate heat and cold. It causes vaso spasms / vaso constriction in the surrounding blood vessels which is what causes the marked discolouration in these areas and Raynaud’s, Erythomelalgia and Livedo. Over time the SFN will cause skin changes that can be permanent or like a barometer can react to the surfaces it touches ie smooth shiny makes skin smooth shiny, heat can be excruciating-as can cold.
I too have SFN which started with heat in my wrists in 2009 and then cane the burning soles in 2011 with RA type bilateral synovitis pain. The SFN now affects my entire body in one way or the other - although not all burning these days - more cold numb tingle and weird sensory issues like crawling, random allodynia, vibrations, tremors and twitching.
My neurologist accepts SFN because she tests me with pin prick method and because I have Sjögren’s which is the rheumatic disease most closely associated with SFN. But she can’t accept that it’s causing tremors, twitches or proprioception issues that affect my gait and navigation. Yet I use an international SFN FB group occasionally and all with long-standing SFN have these same symptoms and their neurologists recognise this as part of the SFN itself. So she calls it functional overlay (related to mental health or conversion disorder) where I say it’s just SFN and Sjögren’s fatigue (ie not functional).
Due to my wretched rheumatologist telling her that my Sjögren’s isn’t very systemically active we are all at a stalemate now. So she sent me to psychologist for assessment and I’m waiting on copy of her letter back to my neurologist now.
I’m very openly disagreeing with my nhs team who I suspect are very behind the times on Sjögren’s and SFN - and am seeing one of the few UK Sjögren’s experts in less than 2 weeks all the way down in Swindon for her second opinion on my situation, lack of care, treatments etc.
The good thing about SFN is that it’s sometimes self limiting and also that they aren’t telling you it’s functional. The bad thing is that it doesn’t show up on EMG/ nerve conduction studies. The neurologist knows this but is just excluding large nerve fibre involvement.
The only way to confirm SFN is by punch biopsy - usually from area near to the burning pins and needles. Sometimes, if you have an underlying condition such as Diabetes or Sjögren’s they won’t bother.
Mine were negative 5 years ago but my GP took them from the wrong places too high up my legs! Also if it’s very patchy non length dependent then getting the affected patches can be very tricky!
But it’s helpful to have this done because it can confirm and chart the progression of SFN. However there are only a limited amount of lab people who can translate these samples correctly because it involves counting all the nerve fibres and is quite labour intensive and a highly skilled job. I’m waiting to have mine redone at her request but have heard nothing at all yet and I saw my neurologist in April.
It turns out that a significant proportion of those diagnosed with Fibromyalgia actually have SFN and if it’s not secondary to a disease process then they call it idiopathic. The world expert, Dr Louise Oaklander, describes idiopathic as an idiotic and pathetic diagnosis we should not accept but that’s for another day! I posted a video of her talking about SFN on here quite recently - she’s great and makes it easier to understand.
Anyway enough from me your SFN Twitchy friend. Xx
PS your caramel doughnuts made me slurp - is it your birthday? Or are you celebrating at last being listened to and believed perhaps?! Xx
If he thinks it’s SFN then he probably won’t do much other than offer you one of the nerve gating antidepressants or anticonvulsants. He will also want to exclude large nerve fibre involvement and be looking at things like your B12, blood glucose and lifestyle stuff such as smoking, drinking etc - maybe try to exclude Lyme and Coeliac - all of which can cause small fibre polyneuropathy. Xx
Wonderfully summarized. And to Lisa, I get the same response from all specialists. Nothing for me to do here. Go see rheum and get your autoimmune condition under control. For some reason we equate rheum with autoimmune do docs even though they are actually trained to deal with muscles and bones. After some reflection, it makes me wonder why we don’t have AI specialists for all subspecialties esp cardiology.
Part of the struggle I personally have with neurology is that mine defers so much to a rheumatologist who has only met me twice in 3 years. The rheumatologist told her last year that my Sjögren’s isn’t that systemically active because my nailfold cappilliary test was normal 3 years ago. The neurologist told me this and she said she was baffled too. But as my neurological symptoms are part of a rheumatic disease she has to defer to my rheumatologist - who clearly knows very little about me or about Sjögren’s.
Ps sorry dodgy SFN fingertips - deleted by accident but fortunately managed to save my long reply and paste it I think. If I’ve repeated myself then just ignore the older one! Xx
Good question, Lisa, about not needing more investigations. Could it be he was certain clinically that you have neuropathy so he sees no need to put you through more tests? TT seemed to think they do not always need further testing.
I’m completely fine with not needing more tests. I think I’m tired with that game now.
I just hope the letter he does is as stern as he said it would be.
Actually isn’t it funny that all these weird things I feel I’ve never really analysed it. Well I thought I could have ms so maybe that’s why I haven’t. The fact I don’t have ms is a big load off my shoulders
I don’t want to pander to the hierarchy of diseases and their seriousness here. But reading your comment about MS made me think.
It sometimes seems to me that it might be easier having a disease people at least recognise. In fact I often feel lucky when I read posts by people with idiopathic SFN because, hate Sjögren’s as I do, at least I know my sensory weirdness isn’t related to this disease.
It seems that people with medically unexplained symptoms spend so much valuable time, money and limited energy trying to find a cause for it so that they can hopefully treat it. They are often just as disabled as friends with Lupus, Sjögren’s and MS - perhaps rather more so because of the extra psychological baggage of living with uncertainty and feeling fraudulent?
You’ve made such good progress finding a good neurologist and I think you should try to keep him if you can. Punch biopsies for SFN are nothing much in the scheme of things re discomfort but having a solid diagnosis of SFN is important too and it’s important that it’s monitored for possible progression too. I had to really fight to get as far as SFN and then fight more to get Sjögren’s confirmed. It’s got me nowhere in treatment terms but I’ve come a long way since I first heard about SFN from my first rheumatologist.
I was trawling diseases that can cause both SFN and CNS and found this:
“Small fiber neuropathy has a poorly understood pathology. It can be a result of a variety of diseases, including diabetes mellitus, autoimmune disorders such as Sjögren or sarcoidosis, paraproteinemia, and paraneoplastic syndrome, with diabetes mellitus being the most common cause of SFN (Table 1).18 Apr 2018
Small Fiber Neuropathy: Disease Classification Beyond Pain and ...”
Some causes:
“Lyme disease — An infection caused by the Borrelia burgdorferi organism, which is transmitted to humans by a deer tick.
Sjögren’s syndrome — A chronic autoimmune disease that attacks the body’s moisture producing glands, causing dry eyes and mouth, generalized fatigue, joint pain and sometimes neurologic symptoms.
Vasculitis — An autoimmune disorder that attacks the blood vessels that supply the brain and spinal cord, producing neurologic symptoms.
Systemic lupus erythematosus — A chronic, inflammatory autoimmune disorder that can affect the skin, joints, kidneys, lungs, nervous system and other organs of the body.
Sarcoidosis — A chronic, probably autoimmune condition that produces collections of inflammatory cells (granulomas) in the lungs, skin, lymph nodes, liver and central nervous system, commonly producing respiratory symptoms and, sometimes, neurologic symptoms.
Behçet’s disease — An autoimmune disease that damages blood vessels, particularly veins. In addition to mouth sores, genital sores, inflammation inside of the eye and skin problems, Behcets can affect the white matter in the brain.”
I absolutely agree! I just don’t know why you’ve been sent from pillar to post to end up at this stage? Or rather I do because it’s such a common theme for many of us.
My eyes have been so dry for so long that I didn’t even think of them as particularly dry it’s a given like my skin and nasal passages and having crap teeth, dry cough, gastritis, chronic constipation etc. It was the SFN that really sent me off on the journey to Sjögren’s. But the first rheumy and neurologist excluded Sjögren’s as my bloods were negative and they said that I just had non erosive RA to blame for SFN.
Another rheum professor (second opinion for possible Lupus) said it was RA with Raynaud’s and Erythromelagia not neuropathy. Honestly I was sent from pillar to post just like you but all at least on the NHS.
I was even down for a lip biopsy 5 years ago when a max fax told me my mouth wasn’t dry enough for Sjögren’s (it still isn’t!) and lip biopsy would almost certainly be a slightly invasive waste of time. It was only after relocating twice that I finally agreed to one at the recommendation of a rheumy I’d never met but who said my ANA and other bloods and symptoms - especially sicca and SFN - pointed to Sjögren’s. My lip biopsy was the most positive one on record and yet my parotids and submandibular salivary glands were not at all showing Sjögren’s! It’s such a complex systemic disease that it takes an astute doctor to recognise it if dentists and optician’s haven’t - many present to neurologists long before the sicca really takes hold apparently Xx
TT — It seems like small fibre neuropathy is diagnosed clinically and, as you said, the additional testing not always needed. But could the NHS want confirmation of SFN before allowing for the expensive medications? Lisa’s doctor noted a problem on neuro exam and requested MRI and neuro referral. Maybe The rheumatologists know they have to get the specialist’s opinion? It took way too long, that is for sure.
The American doctors over-refer to specialists but I did not think that was the case in the UK.
This is very valid questioning, because I just don’t get it. This whole process has been a mine field and the only person suffering is me.
It’s like piggy in the middle but this piggy ain’t ever gonna catch that ball.
I just really got the impression that I didn’t need to go to him yesterday. Although I did have new bloods taken but seems d Cruz is quite capable of diagnosis of these neuropathy’s.
I say it again, my theory and I expressed it to neurologist yesterday I am at a teaching hospital and I feel like my case is being used to teach others . Only my mental health has not been safe guarded in all of this.
I’m in teaching hospital too and the same thought has occurred to me many times! Only I think they have taken what they want from me and are preparing to spit me out now! X
Well the problem they have with me is that I’ve tried 5 rheumy drugs and had severe allergic reactions to 4 - and they are scared. I honestly don’t blame them for not wanting to risk further meds but I think they should still monitor me for disease progression and want students to learn from my unusual case in a positive way. There are lots of rare and little understood conditions such as MCAS which they haven’t even touched on with me and yet I’m a fairly classic candidate! X
The NHS don’t allow expensive medications at all for SFN or Sjögren’s come to that. The only way we qualify for expensive medications is if our brains or CNS or other main organs are involved.
Do you mean a neuro physiologist rather then psychologist? The difference is that neutophysio’s job is to do nerve conduction studies and other is to assess for CBT.
Loads of people with primary Sjögren’s have facial rashes - I do!
Oh okay - this is likely to be CBT assessment like I had a few weeks ago I think. They want to assess to what degree your symptoms are caused by problem converting signals correctly I am guessing. The only way to assess physical problems caused by the brain is by doing a brain MRI - which I’m sure you have had already no?
No you are not useless!! I just wondered because you said you are to have nerve conduction/ EMG still and that’s the job of a neurophysiologist - not psychologist who would be assessing your state of mind for secondary depression etc. X
Had an emg but as doctor said yesterday the results are no good with a fluctuating Illness
Which I have queried a number of times, to no avail.
He agrees and so did my doctor that I am not clinically depressed.
Some days though I’ll be totally honest I don’t want to live like this no more. I can handle all the nerve problems. What I can not handle is the inability to stand and walk for a period of time . I’m bloody 38 . I say I feel like the tin man and I honestly do
Yes tin man is my guy too! I think that they use CBT or related now to try to help us accept the limitations of modern medicine to diagnose and treat so many people. And they want us to commit to being mindful about the positive aspects of our lives as well as the negative.
After all most people with chronic physical illnesses find themselves getting pretty depressed secondary to the physical illness we are experiencing. This is a pretty mainstream approach to treating all chronic illnesses now and in some ways, if the clinical psychologist we see is good at their job, then we are fortunate to be offered this kind of support/ therapy.
I recall being sent to speak to my MP as an NRAS ambassador and being told to emphasise the need for psychotherapy to be offered for all people with RA. It really isn’t good enough to diagnose someone and then just leave them to get on with it themselves without support. scotsman.com/news/people/do...
SFN isn’t a mental health or functional condition - but CBT and anti depressants are often the only treatments sufferers are offered. It may work well as an adjunct but I would argue that this is all it should be. Increasingly it seems to be used by many doctors as an online resource to replace proper clinical input.
The thing is they may feel that there is something clinical going on but because of this diagnosis of SFN I think this will be regarded as an explanation of how rotten you are feeling. SFN is one of the worst conditions because it has no effective treatment bar antidepressants and anti convulsants. In the US some qualify for IviG but this is a hugely expensive scarce resource so they only use it for people with life threatening conditions. And there is no real evidence that it helps those with SFN per se. Xx
Well, that is the advantage of going to a rheumatology center. He still has to figure out what is what so that you get proper treatment. The important thing is you have an ally in him .. and we all need handsome allies 😅
I think he liked me until he felt my dry hairy legs 🤣
Oh and I made a point of now wearing sketchers on my feet. He really did laugh at that. He said his going to check all his patients now and if they’ve resorted to wearing them he knows there’s a problem 😉 x
Re your nerve stuff being “not so important” - it can’t be very extreme then because mine reduced me to a quivering, blubbing wreck night after night and day after day in my arms legs and face. This was to the point where I agreed to spend another week on an acute ward under observation after pancreatitis just so that I could get more IV paracetamol - the only thing that helped ease the terrible burning bone pain just a bit. I only get it like this in my lips and finger tips these days and that’s bad enough!
I once ate a chunk out of my pillow the pain was so bad! X
I spend most days treating burning pains in the soles of my feet. I’ve had this for approx 3 years so have kind of grown with it.
The tremors and pains in my hands stop me from using utensils for long. I can’t maintain a grip for long.
I definitely have a high pain threshold. I think if I’m complete honest I’ve threated for so long that it was ms that I’ve mentally challenged most of the symptoms.
I’ve never wanted to surrender to it.
Of course it really isn’t pleasant and not normal
I have days with terrible mobility and it’s them days that over power my body full of mini fireworks.
Now if I was sure this was causing my inability to stand straight and walk I would not feel so relaxed about it. I don’t have that information or clarity yet so for now I must stay positive, that there’s a mail function in my software .
Yes what I’m saying LL is that SFN can account for an awful lot more of your symptoms than just burning feet. You have small nerve fibres everywhere from head to toe with tiny blood vessels crossing them. Don’t underestimate what SFN can do is all I’m saying - in Louise Oaklander’s words “small fibres, big pain”! X
PS and I have a high pain threshold too which, as I can’t tolerate any pain meds, is a very good job!
Hoping it’s just “a malfunctioning software” rather than SFN that’s causing your other problems of course - that’s what neurologists call Functional Neurological Disorder/ FND btw x
Oh dear yes I’m pretty much an old hand LL - tried accupuncture when the pain was in its heyday about 5 years ago - hated it! I think the needles she put in my legs were like being extra tortured so I used to lie there gabbling! I too worried that I had MS. My very wise acupuncturist (an islander who had studied for 2 years in China) listened hard and declared my SFN - which then had no name apart from RA for me - to be what the Chinese call “Windy Liver” - a much loathed and dreaded form of pain in China.
On the day we both decided to call it a day, because I clearly wasn’t benefiting from it, she handed me a slip of paper with a word scrawlled on it “Sjögren’s?”. She had been to a recent talk about MS - Orkney has the highest stats in the world for MS- and they spoke of Sjögren’s as it’s best mimic.
The neurologist I saw the following year gave me the full neuro work out including lumbar puncture, EMG and brain scan. He said all okay apart from some non MS white matter and paired bands which showed a systemic process was occurring - thought it must be RA - now known to be Sjögren’s as it wouldn’t affect RA sufferers everywhere around their body in this way apparently.
Folk with RA have erosion in their joints, we have it in our small nerve fibres. Last time I saw Dr Price I asked her why rheumatologists and society at large bust a gut to prevent or modify joint erosion but do nothing to prevent small nerve fibres eroding in their droves. She looked a little surprised by the question, shrugged and said sadly “because we know so much more about joints than nerves I suppose🤷🏼♀️😔”.
Mine is mostly just loss of sensation, tingle, twitches, vibrations, crawling and tremors with Raynaud’s and EM these days - about which my second neurologist (an evil woman!) used to bark at me for reporting, “numbness is a negative symptom - nothing we can do now you understand?”. Ugh bad crack that one!! Xx
I’m currently waiting to be seen by a nhs dentist in Eastmans Hospital.
It will be interesting to see what they think.
I’ve been accepted on the grounds of UCTd so I most likely have flagged up to someone there.
I can not see how nerves can not be treated. I have to be honest when I’m on steroids the only thing that is not impacted positively is my bad sleep. I think I can honestly say that a lot of these nerve issues subsided but of course I may still be early on in the nerve processing .
I think the neurologist thought I was quite smart as I explained how when my feet are burning I try to confuse my brain signals but applying vic which gives off a cold sensation and it does work 😉
It will be interesting to hear this other specialist input. When are you seeing her? X
Ooh good luck with dentist - I can’t even think about them just now! 😬🥴
Yes steroids have always helped me too - the injections especially as I have severe gastritis with oral steroids no matter what stomach protection I take. I honestly believe that the drugs I tried such as Azathioprine and Methotrexate worked at preventing the disease progressing at a higher dose. But sadly they gave me severe stomach problems (MTX injections) and hospitalised me with pancreatitis (Azathioprine). I’m sure Mycophenolate helped at the highest dose as the pain went and I turned number - a sure sign that nerve damage has occurred but is now stable for me. But then the rheum and vascular dr took me off it saying “uncertain benefit” and slowly but surely my inflammation markers have soared, I’ve gained weight and my pain flares are back, overall health deteriorating. The vascular dr says this is Sjögren’s, existing SFN damage and “chronic illness” - which doesn’t strike a right cord with me.
I know some of the damage has been done because I can see where the colour and skin changes occur with heat and cold is where the nerves have died in my hands and feet. I’ve emailed my rheum, who has only seen me twice in 3 years, to explain that her steroid jab helped a lot. No reply and I know the vascular dr will not agree to steroids and plans to discharge me end of November.
I’m going to be telling Dr Price this too. I’ve written her a letter and enclosed a list of diagnosed conditions and treatments. She has her letter recapping very thoroughly how things were 2 years ago with me so I’m really rooting for regular steroid injections now. I know this isn’t ideal long term but then which of these drugs are? I try everything to stay on track but right now I’m still in bed because the SFN pain in arms and legs kept me up most of the night as steroid jab has worn off. I see her on Monday 16th - 2 day drive each way. I want to ask her if what my nhs doctors are telling me is correct.
I have ultrasounds of parotids and lumps on my side tomorrow so that will be a relief to get it out of the way!
On the very plus side the recent extraction of molar might have triggered a flare up but it’s completely resolved the burning in my lips and gums! Lose some, win some others all in the nature of life eh?! Xx
They say steroids are bad long term, my dad ended up having a double hip replacement. To this day he said he’d take the hip replacement over his RA any day.
It was a small price to pay in his eyes.
I’m all for living our best life. Doctors shouldn’t really threat over our future problems, we can handle that when we get there right?
I agree - especially as I’ve had a lifetime of autoimmune rubbish so I’m pretty used to pain and unwellness. If I say this is bad then it’s bad and they need to learn to believe me and not assume I have heightened health or pain awareness as the evil neurologist suggested. I’m hoping my now very high PV/ ESR and an equivocal ENA antibody for Scleroderma last year will encourage Dr Price to help me but I keep my expectations of all consultants low these days lol!!! Xx
I see. It is all pretty closely monitored here too, I think. Hoping for good studies in the future. So glad you discovered Louise Oaklander. Looks like she completed a study in 2018.
Oh, Lisa, it has been rough. But your situation has been complicated. You have been difficult to diagnose. You have suffered a lot. But I don’t hear that being in a teaching institution has done anything but help you. That is where you got diagnosed with autoimmune disease. It is not always black and white whether a patient needs to be referred to a specialist. I, personally, would want a neurologist’s opinion. Doctors can work together. At least yours was good-looking! Neurology referrals, from what others here have said, are hard to come by on the NHS.
I can understand how you may see it as a « mine field. » Honestly, I have good insurance in the US, and it took the same amount of time for doctors to sort out my neuropathy. Sometimes they have to rule out a lot of things first. That is just the correct process. It is not fun. I am glad to finally know that it is my nerves that are the cause of crazy symptoms even though there is no cure. I can help myself as much as possible.
Onward for you! Glad the neurologist was as impressed with your attitude as we are!
This article and many others show what we are up against. If the NHS can diagnose someone with a terminal illness and then leave them to pick up the pieces as this man describes - then what hope is there for the rest of us? scotsman.com/news/people/do...
This sounds really positive that he is making a diagnosis? Has he offered you any treatment or will the specialist he has referred you on to make those decisions?
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