"Wear & Tear - just normal" and Erythromelalgia anyone?

Mat48

Hi. Sorry I've been away from here for a long time because all my symptoms had turned neurological and the RA is still nowhere to be found, despite 7 months since I last took MTX. I haven't seen my rheumy about my RA since the 1st August when he agreed that it was best that I stay off DMARDs because I only had "low level synovitis" in one thumb joint and my left knee. He felt that my seronegative RA wasn't sufficiently active or erosive to warrant the drug side effects I have experienced to date. So we would just wait and see and respond to anything as and when it occurred. I thought RA always comes back? He said he'd see me in four months but 8 have now gone past and I've been passed over for two clinics already.

But he knew I was seeing a neurologist and having a lot of tests so I'm guessing he felt there wasn't much point in seeing me until more is known about the neuropathy affecting my limbs so badly. But now the neurologist is saying that MRI of brain and nerve conduction tests are all okay so it may not be a neuropathy at all. He didn't say what it could be though - but the really nice neurophysician told me about a rare and little understood condition called Erythromelalgia. He went rushing off to tell my neurologist this - saying he thought it should be investigated further by a doctor in Dundee.

Then - hours later when I'd had my lumbar puncture and many blood tests for Lyme, Hughes and other immune mediated neuropathies my neurologist came and sat on the bed and explained that the only thing that's flagged up so far has been some arthritis in my neck - not ipinging on my spinal cord so wouldn't explain my symptoms. I asked if this might be the cause of neck and shoulder pain but he said he wouldn't have thought so - it's just something we would expect to find with your history of RA - no big deal. So I shrugged it off too. But since then I've been wondering because I have lower back pain now, not helped much by the messy lumbar puncture - but it had already started. Last time I saw the physio two years ago she said that this was wear and tear in my L5 - normal for my age. I then asked my rheumy about the left knee which hurts like hell intermittently and which now is slightly swollen and often hot. He just shrugged too and said "wear and tear I would have thought".

I'm 52 and look after myself very well. I accept that we usually get wear and tear as we age but how come I'm hobbling and can often barely get out of a chair because everything in my bottom seems to lock - where most of my older friends are still springing about with the odd period of ouch about their ageing? Is this RA or OA or might I actually have some other type of inflammatory arthritis that no-one has bothered to look for such as PsA without the psoriasis? Should I push for x-rays perhaps (never had any apart from hands and feet) or just accept that I'm acquiring more and more wear and tear at the rate of knots and learn to live with it?

I should add that I no longer get my bloods monitored but last time my ESR was taken it was 55 a few months ago. Other than this all my autoantibodies and GFR are normal range. I get the results of the lumbar puncture etc next week but really not holding my breath - sure all will be normal. So it's really all the arthritis I'm starting to wonder more about now.

Starburst

From being on arthritis forums, I've noticed that there is a (not insignificant) group of people who have chronic and severe osteoarthritis at a relatively young age. Also as a social worker for older people and those with physical disabilities, I have seen some people very disabled by osteo in almost every joint. I'm contract, some people leap about in a rather spritely manner with a wee touch of age related wear and tear in a knee, hip or two.

I am vaguely aware of some research looking into why osteoarthritis affects some people so badly and others, seemingly escape unscathed.

At the age of 26, while I only have a small amount of OA in one ankle, I do have a fair amount of joint damage from RA, so I can empathise with the frustration that people often feel. I have sometimes come across a "nothing we can do now" attitude that I find most irritating.

Might be worth a buzz to the AC helpline for a chat?

Mat48

Thanks for your reply Starburst. I suppose I've been so focussed on all things neurological and autoimmune over the past year or two that I have been quite successfully ignoring periods of excessive stiffness, lower backache and shoulder and neck pain because I'm twice your age and I guess I feel it's all just inevitable.

But since these tests I have started to wonder about how fast it all seems to be happening and whether there might be a link between the neuro stuff and the arthritis and the high ESR that my medical team are ignoring because they assume my arthritis is just that? It just seems to be rather coincidental - that's all. And I'm also unsure how they can properly diagnose by my description of the pain and its location and my age, rather than by examination or imaging? I mean how can they be so sure it's not actually PsA but without the Psoriasis for instance? The burning of my limbs affects me far more severely nowadays but since these tests I've wondered if they should be joining up some more dots perhaps?

I hope you are okay and enjoying your work these days?

Mat x

dreamdaisy

ESR and CRP are measures of inflammation in an auto-immune arthritis, of which there are many kinds. I was eventually diagnosed with PsA when my skin obliged with a bout of the pustular kind on my palms and soles. The label changed but not the meds. OA has followed as a result of the joint damage caused by the PsA, and was diagnosed after Xrays of the affected joints. The meds for the PsA don't affect or improve the OA, which is hardly surprising as that is a different beast altogether. Rheumatologists deal with auto-immune arthritis and GPs and orthopaedic surgeons cover OA. OA is more 'mechanical' in its cause whereas the auto-immunes are far more complex and demand more specialist knowledge.

I suppose 'wear and tear' is normal, it's part-and-parcel of ageing, and the more one physically thrashed one's body when younger the more likely it is to occur, but for those with an auto-immune arthritis it can appear earlier than expected. DD

Mat48

Hi DD and thanks for your reply. Do you know anyone who has been diagnosed with PsA without the psoriasis ever showing up I wonder - is this possible?

I was looking into the neuro physiologist's suggestion on Friday of Erythromelalgia and saw it is more commonly associated with PsA and Lupus than other types of inflammatory arthritis. It's just that my arthritis seems to be surfacing in places not so commonly associated with RA more and more. Does PsA joint erosion show up differently in MRI/ X-ray to OA I wonder? Is there any way they can distinguish do you know? I've always assumed that PsA arthritis is the same as OA/ wear and tear but just more rampant in the way it progresses but I may well be wrong. If it's just wear and tear that's affecting me I'll continue to take it on the chin as part of my ageing process of course but I am wondering why my ESR is still so high if that's the case.

I had a fall just before Christmas and my left knee, which has been painful for some time now anyway, is still numb and quite swollen. I have wondered if I should perhaps use this as an excuse to ask for it to be x-rayed although it's only painful if I knock the knee cap - otherwise it's completely numb to the touch. I probably wouldn't bother if my back wasn't also so sore - bruised by the dodgy lumbar puncture now of course!

Just wondering whether X-rays can distinguish between PsA damage versus OA damage. My rheumy took me off all DMARDs last July because of severe intolerance and until synovial swelling shows up again I'm told I won't be offered anymore DMARDs or Biologics. I take Duloxetine and sleeping tablets for the burning nerve pain but that's all currently.

I'm always tired these days and always flaring with these burning extremities so would like to be offered a new med to suppress this inflammatory process if possible - but haven't seen my rheumy since July - although he spotted me in the airport in a wheelchair straight after my lumbar puncture and gave me an embarassed wave - probably thinks I'm a right wuss!

stickywicket

I don't know anything about the long-name thingy but I do know that my OA piggy-backed on my RA and that, if I'd been able to have DMARDS from the off, things could have been very different. I wasn't and they aren't but it does seem reasonable to me that, if you have wear and tear earlier than your friends, it's because you have RA (or PsA).

As you know, I'm not big on specific labelling. RA, PsA, an auto-immune weed by any other name etc etc and, as the meds are, to all intents and purposes, the same, what does it matter? Officially I have Still's Disease. I was told, when diagnosed, that, if you got RA before age 16 it was called Stills and more could go wrong. I tell people I have RA as Stills take too much explaining and, besides, I expect nowadays I'd be JIA or something of that ilk.

By all means check out reliable sites for Erythromelalgia but the knee and lower back pain sound like perfectly normal OA to me especially if you had a recent fall.

Mat48

I agree with you about the whole "what's in a name?" thing up to a point SW. However the name does matter if it's the difference between arthritis and inflammatory arthritis and getting onto further disease modifying medicine - or not as the case may be. I don't really want to find out ten years hence that, had I been correctly diagnosed now, I might have slowed things down re joint and nerve damage. Thanks anyway.

dreamdaisy

There is a big difference between the physical effects of auto-immune kinds of arthritis and OA: the former have around two hundred versions but the latter only one. OA is 'mechanical' in its source, viz. the cartilage between the joints erodes so bone is left rubbing on bone, which is why GPs and orthopaedic surgeons deal with it. The sources of inflammation for the former are many and varied, in the case of PsA it 'usually' begins in the smaller joints such as fingers and toes, but mine began in my left knee. When my blood forms are completed by whoever some mention RA, some PsA: when the meds are incorrect only then do I protest because the meds are the same. I have never had a blood test for OA, why would I?

Sticky, Starburst and me are practising arthritics, not practising rheumatologists. They have been classified as RA-ers but not me. I see no reason why someone with PsA could be diagnosed as such without the presence of the dreaded P but what do I know? For what it's worth I suspect you have some form of auto-immune inflammatory arthritis, but, as I said, I am not a rheumatologist. DD

Mat48

Thanks for explaining the difference in the way it impacts on the joints - this is useful to know. However I wasn't asking for a diagnosis DD - just whether you or others here, as sufferers, have ever come across anyone with PsA who hasn't had Psoriasis. I was also wanting a bit more information on whether they appear differently on x-ray and MRI - since I have just been told by my neurologist that I have arthritis in my neck. I will find out eventually what type I have I guess but just thought it worth asking here as it's a place where people come who live with many types of arthritis.

I obviously have some sort of autoimmunity - that's not in dispute. But it's just whether this includes the arthritis in my neck, lower back and left knee and whether these doctors can actually tell without examining me or getting imaging done. As OA is very common in people of my age I guess the answer is yes they probably can.

Boomer13

Hi Mat;

While I'm very happy to hear your neuro scans were clear, I am sorry you are still without answers. For myself, I am resigned now to the wide-ranging, non-specific markers I have indicating widespread, systemic inflammation. These cause or have caused anything from erythromelagic/Raynaud's events, migraines, neuropathic symptoms, vestibular and other inner ear problems. My diagnosis is still PsA. I have no permanent damage (except to one ear) from my extra problems, so my doctors don't treat me for these complaints other than offering prednisone and/or symptomatic treatments. The PsA has partially responded to injectable methotrexate and I'm seeing my rheum again at the end of February. I now try to live with the notion that I may be as well as I can be at this point in time so I best make the most of it. I have fluctuating liver values that go up and down every few months, so I believe it is only a matter of time before I have to go off MTX which will be very bad for me, even though the drug causes me much grief with nausea for days after my injection. Sooner or later I will be on a biologic and who knows how well, or if it will work(?), so I might as well live with my PsA as it is now. That is what I'm trying to do anyway. It's a battle, I must say! Sometimes I win for a day, but mostly I lose.

The connection between inflammatory joint conditions and OA is the inflammatory chemicals in the joint space eat away at cartilage over time causing it to thin and erode in much the same way as OA. Apologies if I misunderstood your question.

When I was being initially examined for an inflammatory arthritis, the symmetry I presented with in hands and feet convinced the doc that I had RA. I had no psoriasis that I knew of. That was 2005/6. I had rashes on my feet for a very long time but nothing serious that stayed for any length of time. Only in 2012/3(?) when I had a persistent rash biopsied was psoriasis confirmed, and I was handed my PsA diagnosis. If my rheum hadn't asked me about my family history and psoriasis, I probably would not have had a skin biopsy done and I would still be in that horrible limbo, not knowing what was wrong. I think a mild case of psoriasis can easily be missed plus there are so many different types, and I notice that most GPs only look for the common type(s).

As for Xray's, I believe that long standing seronegative types of arthritis can appear different than RA on joint xray because, while they both show erosions and thinning of cartilage, seroneg. types can also show bony growths ("bridging"), bone spurs, etc. This is specific to seroneg. arthritis, but obviously take a very long time to appear as the body lays down new bone slowly. In a long-winded way, I've just said I can't answer your question (insert laughter here ). I do empathise with you and can only encourage you to have any persistent rashes biopsied (if you haven't already) if you are wondering about having PsA. I do wonder for myself when I am feeling particularly bad, if it can all be due to PsA but I am resigned to the fact that nothing can be done until it all takes a more serious turn for the worse. Hopefully, it won't.

I am sorry you are still in limbo regarding your symptoms and can't blame you for being concerned about leaving your arthritis untreated and future joint damage. I really wish I had a solution for you.

Take care ((((())))),
Anna

Mat48

Anna I'm really grateful for your very considered comment - this was exactly the kind of advice, born of experience, that I was looking for when I asked this question here.

For me it's really just a question of whether I have a dormant, inactive RA operating alongside some other type of autoimmunity with OA thrown into the mix. Or whether I actually have some other type of inflammatory arthritis that might explain why my inflammatory markers are often raised and I feel tired and unwell so often too.

I think, as you say about yourself, that I will just have to wait until things either improve or worsen or remain much the same. Often just now I tell myself, quite convincingly, that what I actually have is an undifferentiated tissue disease that hasn't yet found itself properly - and hopefully never will. However I have been diagnosed with seronegative RA and, having failed to tolerate Hydroxichloraquine (facial hives and swelling), the main drug used for UCTD, and also had a severe alergic reaction to Sulfa, I feel I've been left to muddle along on my own now with only NSAIDs, paracetamol and an anti-depressant for nerve pain.

This would be okay where the arthritis side of things is concerned, but the neuropathy/ Erythromelagia is getting very nasty indeed 24/7 so I am trying to establish what to do if my lumbar puncture and blood results come back saying there's nothing wrong next week. The neurologist did agree that I should have a skin biopsy from my ankles (very sore all the time with the nerve pain) to find out whether this is a small fiber neuropathy or not so some investigations are still ongoing but I do feel it's all down to me to work things out because no one else is going to bother now the serious things like MS have been ruled out.

I know you understand my concern at still being in limbo Anna - and I'm very grateful for this. Take care, Mat xxxx

PS and thanks for explaining the similarity in appearance between inflammatory arthritis and OA - this is what I wanted to know so I can decide whether to pester for x-rays of the affected areas or not.

stickywicket

I've just remembered - you can get a rash with Stills too though I never did.

Starburst

Mat, OA and inflammatory types of arthritis definitely show up differently on x-rays and scans. I spoke to a lovely lady on the NRAS helpline who was super knowledgeable and explained exactly how the changes are different. This was confirmed by my rheum as I was perplexed that I had OA in my ankle and wondered if it was a misdiagnosis which it wasn't, in the end.

Mat48

Thanks. I do know that RA and OA show up differently to each other on x-Rays and scans. I just wasn't sure about other types like PsA, AS and Lupus? This made me wonder because none of the parts that my rheumy says are probably affected by wear and tear (mainly by location) have ever been x-rayed or scanned. However the mri of my cervical spine on Friday did show what the neuro called arthritis. But he is a neuro not a rheumy so I will ask my rheumy for clarification when I next see him in March (hopefully!). Sorry you have both to cope with - glad the NRAS helpline person was good - they usually are I know.

Starburst

Sorry if I was unclear, I'm running on very little sleep. In a nutshell, I meant that radiologists can tell the different types of arthritis apart, be they RA, PsA or OA. I believe RA looks like "little bites" have been taken out of bones and enthesopathic types of arthritis appear differently, although I can't remember what explanation I was given. The only exception is SLE which is rarely erosive.

Mat48

Thanks for explaining this. I'm making an educated guess that whoever looked at the MRI results on the day (Friday) and told my neurologist my brain was normal and that "only some arthritis" showed up on my neck - not touching my spinal cord, must have meant wear & tear OA then. So that just leaves my lower back and left knee!

Sorry you are so exhausted and hope you sleep well tonight.
Mat x

dreamdaisy

I'm completely muddled now: as I understand it you have seroneg. RA (as do some others on here) and maybe now OA. You say you have spent the last year focusing on matters auto-immune and neurological - does the former include the seroneg. RA? I don't know anyone who has been diagnosed with PsA without the P but why would I? I don't hang around eavesdropping in rheumatology and I have no-one in my social circle with any form of arthritis.

It must be very tiring for you, all these questions and no proper answers. DD

Mat48

Yes DD it is very muddling and very tiring for me indeed. My GP said she had recently read a BMJ article about people who are undiagnosed suffering the most out of any group of patients because we feel like malingerers, nutters or both. It is very socially isolating and when I limp down the street people say "oh why are you limping" so I say "it's just the arthritis" but it isn't - it's a mix of burning feet and nerve pain in my ankles, a dodgy left knee, a sore lower back and shoulder/ neck pain sometimes. I feel like a fraud without a diagnosis.

You say "why would I?" But I'm not just asking you. Others here may know fellow sufferers socially or may come forward as having a similar pattern to myself as Anna already has.

I have been diagnosed with seronegative RA and this was confirmed by a second opinion in May based on photos of my fingers/ knuckles on diagnosis - which the professor said were "text book RA synovitis". However - 8 months since stopping RA it still hasn't come back in this form. My rheumy hasn't seen me again since July - wheh he said he felt we could afford to take a "laid back" approach given no erosions to date and my severe intolerences. He wrote "Again she asks about this nerve pain - which I can only assume is a mild small fiber neuropathy. I'm not minded to investigate this further".

But the GP was minded to and referred me to the neurologist after over a year of nerve pain. So the neurologist saw me 4 months later, disgnosed an advanced and progressive small fiber neuropathy and got me back last week for many tests to exclude MS and other more serious immune mediated neuropathies, most of which are very rare.

I am actually more fearful now that the remaining test results will prove negative as I strongly suspect, than that something finally flags up at last, however serious. I know that the idiopathic term will make me feel that this is all in my head - although rationally I know it isn't.

Meanwhile where has my RA gone to? I know RA doesn't go away without the help of drugs and I'm wondering if it has been replaced by all this awful burning nerve stuff or if the wear and tear around my body is in fact inflammatory by nature. So I am apprehensive and looking for answers still. Sorry for this but it's just how it is with me and mine. :roll:

stickywicket

I can feel your frustration and no wonder you are frustrated. I have looked up Erythromelalgia on NHS Choices and I see it can be caused by RA which, I guess, would make sense.

You ask where your RA has gone. Spontaneous periods of remission are not unknown. I had 'rheumatic fever' (Presumably the start of my RA / Stills / JIA) aged 11 then nothing until I was diagnosed at 15. Between 15 and the birth of my elder son when I was 24 I had periods of remission too. These weren't med-induced remissions as I never had any proper DMARDS until later. I was also in remission during my first pregnancy.

Re the PsA without the 'P' element - I've also remembered that docs – especially eager young medics – used to try to fit me into the PsA pigeonhole because my Mum had psoriasis all her life (but no arthritis).

Mat48

Thanks for researching Erythromyalgia (EM) and for your sympathy for my frustration SW - it means a lot. Thanks also for telling me about the periods of spontaneous remission you experienced - this helps me too.

Someone from the NRAS helpline told me that if it really is RA it would be back as MTX finally left my system. But it is now 7 calendar months since my last dose and it defintely hasn't returned in my smaller joints in recognisable fracture like pain as it started and continued for a few years.

I have just been listening to readings "down the rabbit hole" by a consultant neurologist on radio 4 about various remarkable cases he has encountered over his work practice. There we a few readings featuring hysteria or malingerers and I find myself wondering, not for the first time, if I'm imagining the burning pain in my hands and feet, legs and arms. Especially because I get no reddening or swelling with mine as most sufferers experience and as the neurologist pointed out to me.

I did ask on an EM forum and two of the moderators said this is a bit unusual but not impossible and would be called "a blind flare". Everything else about it fits the bill though. I console myself that the neurophysiologist is very experienced and took a shine to me (in a nice way!) and told me that rheumatic diseases are more complex neurologically than many rheumies realise fully - and my EM symptoms were probably closely linked to my dormant RA. Oh well. I suppose the main thing is to be believed - and in order to do this I have to believe myself and the symptoms that are plauguing me 24/7. X

stickywicket

Mat48 wrote:

Someone from the NRAS helpline told me that if it really is RA it would be back as MTX finally left my system. But it is now 7 calendar months since my last dose

I can only repeat what I wrote above, Mat. In my early years my RA went into remission on several occasions long before I was introduced to DMARDS. In fact, my bad RA times were O-levels, A-levels and Finals. My remissions usually lasted more than 7 months.

Mat48

That's very interesting SW.

I have had a few others speak of similar experiences of extended periods of spontaneous remission for their RA and my rheumatologist obviously thinks it's possible. I'm not sure that full remission can be achieved when inflammatory markers are still high - although I realise this is just one clinnical sign of of many.

I think I might ask the physio I see on Monday whether she thinks I should push to get my left knee x-rayed just to see whether it is OA or RA that is making me hobble still. My knees were where my RA started, followed quickly by wrists and knuckles. But if it all seems to be wear & tear now for sure then I'll just focus on trying to calm down the burning nerve pain - which actually started before the RA symptoms and would flare simultaneously for a while so I just assumed they were all part of same thing.

I wonder how much teenage hormones and later on pregnancy hormones played a part in triggering your flares and periods of remission with your Stills/ RA? Very grateful to you for telling me of this experience. Mat x

stickywicket

It was an acknowledged fact, even in the early '70s when I had my two, that pregnancy hormones could trigger a remission. I think there were bits of research trying to work out why and how to reproduce it but clearly nothing came of them.

The others? Why look further than stress? It's a known trigger.

Boomer13

Given all the redundancies of the immune system, I wonder if your RA is active and other parts of your immune system are compensating somehow? Just a thought. In my own case, I have felt more often than by chance alone that there are two things at work and one triggers the other. That's my impression after living with this for 8/9 years now.

Mat, having gone through a considerable length of time suffering and in diagnostic limbo, I think the stress of this is not insignificant and can be overwhelming. I truly believe it has a substantial effect on your illness. I'm sending you more than a few hugs (((((())))), and lots of empathy that you are feeling left in limbo. Horrible. It may be that medicine does not have answers for you at the moment but I think your case will be figured out in time and with the right medical person. Stress of all kinds is horrible for myself and endlessly frustrating that I have absolutely no control over how my body reacts to it. Meditation seems to be the only way I can lower my physical reaction. Frustrating.

Maybe your neurologist is on the right track recommending a biopsy? They may be able to answer several questions at once regarding vasculitis and sf neuropathy by looking at the tissues directly.

I sure understand your dread of having yet another test that does not yield answers. Good that it's negative but still leaves you wondering what's wrong.

Take care ((())).

villier

Hi Mat, I am sorry cant help you out re: the arthritis, I just want to say that at least once you get the skin biopsy(painless) done you will know for certain whether you have a small fibre sensory neuropathy. I have had my very rare one for 12 years now and only got diagnosed 2 years ago, the cause of it my Neuro is certain is Sjogrens although my Rheumy is still sitting on the fence. I have also acquired(greedy mare ) PMR which 30% of people with Neuropathies and Sjogrens have. Please let us know how you get on it will be interesting to see what diagnosis they come up with. x

Mat48

Firstly to respond to SW. I agree about stress as a trigger of course although in my case I've been far more stressed out by this relentless burning and diagnosis limbo than I ever was when my joints flared. Although this was excruciatingly painful at times I managed to take it in my stride somehow. The burning limbs have made me severely depressed though I admit. Better now I'm taking Duloxetine and on a week of Zopiclone as prescribed.

I lost all my hair as a kid and was plastered in eczema everywhere for my first pregnancy and then again after my last baby was born (total alopecia plus raging eczema). But the eczema stopped suddenly and my hair has been full and thick for the past five years despite RA plus extras. I wonder if the immune system can only really attack one thing properly at a time perhaps? That's how it feels to me anyway. Although I agree with you Anna that the thing that is most overwhelming (feeling of being dunked in boiling oil with stinging nettles!) might be masking active RA - which is why I asked here about the areas of my body being relegated to OA/ wear and tear.

Anna thanks as ever for your compassion and kindness and (((()))). I agree that it's just a waiting game and we both know there's nothing to be gained by allowing this to get us in any more of a pickle than can be avoided - what good does it do after all? I think that now Christmas is out of the way and sons are all back at uni or school and I've resumed work as an artist and volunteer and also am singing in my choir again from tonight (getting excited after another day in bed flagging!) - this is my equivalent of meditation.

The main drawback of the volunteering work (which I'm hoping will lead to part time paid work in time) is that I have to travel a lot (air travel) and this means I end up in bed totally wiped out and in pain afterwards for days so it's a mixed blessing.

My woman GP did say on Monday that she promised they would help me get to the bottom of it all and find a treatment too - a rather risky/ foolhardy promise I thought but it helped me to feel believed and that I'm not completely on my own with this journey. (((()))) for you too. MatX

Marie I think of you very often. I sat with three people in the hospital in Aberdeen who were having their IVIG infusions for MMN and CIDP respectively. We were all sitting huddled up together on sofas for two days so had a lot of time to talk, sympathise and listen to each other's symptoms, share info on diagnosis's and tests etc. They were all very supportive and kind to me each time I was called through for my tests. I was in a right state after the rubbish lumbar puncture because I thought I would miss my flight home and could barely walk. There were no taxis available because of rush hour traffic. One woman phoned her hubby to try and get him to collect me but he didn't answer - bless! In the end I made it thanks to helpful taxi driver and a wheelchair assistant at the airport who rushed me through security - only to find flight was an hour delayed!

My neurologist thought Sjogrens an unlikely candidate because my antibodies are negative for SS. After the nerve conduction tests came back normal he says he's not even sure I have a neuropathy anymore. This is why I'm wondering about the neuro physologist's eureka moment re Erythromelalgia. I believe only 40% of sufferers with EM have SFN. The people having IVIG didn't seem to have worse symptoms than me - pretty similar mostly only it showed in their bloodwork or their spinal fluid or EMG or all three. None had much arthritis though or diagnosis of RA.

I will update but I really don't expect there to be anything much to say abou the remaining results. X