Let me clarify. When your CRP was 160 last week were your symptoms worse? When your CRP dropped to 17 on Monday, were your symptoms better? In other words, do YOU feel the changes in CRP/ESR?

I agree that your immune system is likely at the root of this and that is why the IVIG might help to modulate it. I understand the NHS makes it hard to get approved, but if you have a positive skin biopsy and at least a positive ANA long with your swings of inflammatory markers, it could EASILY be argued that this comes from an autoimmune basis even though you haven't identified which AI disease. This is what I think you should present to your neuro.

The pain from SFN can certainly affect the mouth, nose, tongue, etc.

Hi Mat52
Sorry to hear of the trials you're going through. Just a couple of quick suggestions (my computer's on a 'go slow' today so getting anything done is a hassle).
Firstly - did your RA originally start as a result of some other illness? eg my family has a strong tendency towards autoimmune; my father developed RA after getting Leptosporosis, my brother got RA after a bad bout of pneumonia. Could there be some other underlying undiagnosed condition that is contributing to this?

Re your Neuro review appt. Focus on what is important to you - both in imparting info to the doctor and getting your questions answered. Sometimes they don't want to commit themselves to specific treatment choices - especially if your symptoms are in remission on the day of your appt. Try asking them if it would be possible to get an urgent appt. during the middle of a flare. Also see if the nephrologist can forward a report to the neurologist before your appt. Her input could be important.

Is the pain in your mouth definitely TMD or could it be Trigeminal Neuralgia? - I've got both - fortunately both under control at present. It's good you're seeing the Maxillo Facial specialist as this is how I got my TMD sorted. They made a custom fitted jaw splint and gave me facial exercises to do - these have definitely helped and I feel are a better option than the $5000 surgery proposed by an orthodontist. TMD can be due to both a physical cause (changes to the jaw from RA are possible) and a psychological process -all the stress you've been through could be adding to it.
Hope this helps - please feel free to ask more questions.

This is really helpful thanks. I am very stressed out but I don't think this is causing my jaw/ mouth / nose problems because they are pretty much the same pain I have in my peripheries. I do think it's probably neuralgic rather than arthritic because I can open my mouth reasonable well and have no clicking or jaw locking but my muscles are swollen and my gums, lips and teeth all feel sort of tight and swollen and they sting. I can't really describe this pain apart from saying it feels the same as the pain in my feet age ankles. As if my mouth and nose are out of sync with the rest of my face somehow?

I don't think my ESR would be at 78 if all this mouth pain was stress deleted somehow. If it's a case of what came first the chicken or the egg then the nerve pain arrived over two years ago and I've never know how to deal with it.

Last time he suggested cymbalta and I had a very horrible experience with this latest drug, Imran. I Had my RA verified by a doctor last year so I'm really hoping it is all part of the unusual presentation of my RA and I will back to autoimmune diseases.

I did have swine flu and severe tummy problems pre RA some years ago. My mum and dad both died from heart related vascular disease so the mention of vasculitis did worrywart a lot,

Ps yes my RA started after a few heavy duty bugs - food poisoning followed by swine flu with no break in between - a bit like this year I've had flu and pneumonia followed by all this rubbish!

The ONLY Neuro I ever had success with was a headache expert. I was actually in his Clinic for Neuropathic Facial Pain/Paresthesia and TN caused by an arterial knot round my Trigeminal Nerve when I suffered a headache attack in front of him - as I had suffered for years (8 times a day, every day), thinking they were just part of the TN. He immediately diagnosed Chronic Cluster Headaches and put me on Topiramate - which also helps with the Neuropathy.

Unfortunately, at my next appt 6 months later he was gone, moved on to another Trust as is the pattern amongst Neuros down here. You never get to build up a relationship or rapport with one, and each has their own ideas and pet medications.

But it sounds as though your guy is at least reliable and stable, and you are a repeat patient so there is foreknowledge. All this counts for something, I'm sure. Just don't go in with a preconceived result in mind, and try not to drown him in information so he feels forced into a dx. Better to spoonfeed facts slowly as he is amicable, rather than seem pushy.

Dave.

This is very wise advice Dave. Sometimes I think I'm too convincing for my own good at these consultations. The result is that they get my hopes up with a verbal diagnosis and then change their position if tests dint correspond. My rheumatologist comes out with lines like "we treat the patient not their blood" but if the blood doesn't support the symptoms they just back away.

That's lousy about the lack of continuity - I would hate that. The two consultants I had last weekend I will probably not see again but having people come fresh to my case was actually pretty helpful in this instance.

I'm not sure if my behaviour is exactly pushy but I think I'm very believable in person. I would hate to live in the south now from a health perspective. This neuro has apparently always worked in the same hospital and he does seem good but I was disappointed he didn't stick to his guns over this being immune mediated small fiber neuropathy. I don't believe in idiopathic as a term that is acceptable.

For me it's a no brainer that my neuropathic symptoms are part of the inflammatory process because of my ESR. I mean how could this be sitting at 78 now if I have no infection, no visibly swollen joints and all my pain is in my connective tissue? It has to be either in my nerves or in my blood vessels or in both. My guess in that it's the latter, both, and that I have some kind of vasculitis. But 'm trying hard not to suggest this to them and just present them all with the saline facts.

This approach has only got me so far though because they need evidence as supported by bloods, X-Rays, MRIs and nerve conduction plus skin biopsies - which they don't get from me - ESR and CRP aside. Lumbar picture went badly wrong so results contaminated by trauma. I would have a other if I thought it would help but after 7 attempts at tap I'd want convincing!
Mar x

Hi Mat52

Your neuropathy sounds like it may have developed as a result of one (or more) of the auto-immune conditions. The high ESR rate mightn't be a reflection of the SFN but more due to an AI - especially if you have something else undiagnosed going on. It'd make sense that if you have an AI condition flaring then the PN will be aggravated. ESR is a non specific test and really should be used in conjunction with other tests. But your rate is high enough that the doctors should be following it up.

http://labtestsonline.org/understand.../esr/tab/test/

From your description of your jaw symptoms I'd agree it sounds more like neuralgia than TMD - sad to say the Max Fac may not be of much help in that case but definitely worth asking as you never know what experience they have. The neuro will probably say TN and include it with the SFN.

Your neurologist may not know much about endocrinology (and vice versa in my experience) so asking them about APS will probably draw a blank look. Maybe discuss it with your GP (again probably a blank look!) but I would request an urgent endocrinology appt. I think I remember you saying once before that you're not under an Endo for your Hashimoto's - just the GP. There's some tests your GP could order beforehand. Fasting cortisol (8am) to rule out Addison's. I'm not sure what tests for the other conditions but ask your GP.

If you feel both your Hashimoto's and RA are being reasonably well managed there's a chance something else is going on. Keep searching for answers. I've known the fatigue and brain fog only too well - happy to help research for you if you don't have energy. Take care.

Hi Bluesfan. I have just read the pdf you attached on Addison's associated with Hashimoto's. I do sometimes use the thyroid UK community and people on there have told me my thyroid bloods are out of whack and I need to self medicate with T3 or NTD. I get worried at the idea of self medicating - in fact it scares me rotten so I usually come off the community again. I've asked my GPs several times if I could be referred to an endocrinologist but they say that with my thyroid in normal range and blood glucose too they can't possibly refer me to one.

I'm really rather at my wit's end because they surely know that something is wrong with my very high ESR and huge swings in CRP. I can see then dismissing all my symptoms as being Fibromyalgia or CFS otherwise but no one is saying that to me although the GP did say he thought I was over anxious when my husband got him up to our house last week. My husband got cross and said that, in his work with the elderly in a care home he comes across anxiety and attention seeking behaviours a lot and I'm absolutely not like this. I'm 52 and I feel desperate to be well enough to get my career as an artist back on track and we want to move to the Scottish mainland and start all over with this in mind and this is a very exciting project for us both. The last thing in the world I want is to be watching my life slip slowly away in bed! But this is what is currently happening.

Why would none of these doctors be helping me by checking out my cortisol levels and looking for Addison's Disease? I could send the link to my GPs by email as I am getting my blood tested again on Monday morning in preparation for the neuro and Max fax appointments. But I have emailed both last week saying I am not happy at their advice to just "let the dust settle" after these two admissions. I absolutely do not want a third admission.

Right now I'm lying in bed at its 4.43 am. I've taken lots of the laxtulose and Senna the hospital and GP recommended I take with the Dihydrocodeine to prevent constipation. It has worked but still my stomach and lower back are hot and painful and I keep having these awful sweats/ fevers. Of course I'm at the age where everyone rolls their eyes about the sweats but I don't think they are menopausal as I'm well past my menopause now and never had a single hot flash. Like everything else including gallstones it feels a very unfortunate coincidence. Instinctively I know that the neuropathy (including mouth/ jaw pain), sweats, GI troubles, immense fatigue and high levels of inflammation are all closely linked to my autoimmune system. I don't just feel anxious I feel terrified that I will just fade slowly away with everyone shrugging and saying "let the dust settle" or thinking I am over anxious.

I've lost faith in my GPs and my rheumatologist and don't expect much of the Max Fax or the neurologist. I'm usually quite robust re tears and stuff but I did break down in hospital last Friday and the locum consultant and another lovely hospital doctor tried to console me that they would get to the bottom of it all for me - which of course they haven't. Despair isn't me but I'm too tired to fight my corner now.

I'm gluten free, take adcal d3 and was taking B12 sublinguallly but stopped because it seemed to make no difference after about six months. They did test me and, like my thyroid it was at the lower end of normal but I've read Mrs D's sticky thread and know this doesn't mean I can't have PA/ B12 deficiency. As it wasn't helping I stopped supplementing so that if I'm tested again it won't skew the results. I did get myself privately tested for coeliacs antibodies 18 months ago and though it showed I am a bit intolerant I certainly don't have full blown Ceoliacs.

I really appreciate your offer of help. I admit I really can't do the science and that's another thing I couldn't bear about the thyroid community because I an discalculaic and find all the numbers impossible but can't trust strangers to tell me what thyroid drugs to buy online and cut up and self administer. I do need advice but more the kind you are giving via the medical route than chopping up portions of T3 and using home testing kits.

What lab tests did you have for gluten sensitivity/celiac? (I assume you haven't had a full endoscopy of the small intestine, which is the absolute gold standard for celiac diagnosis, assuming the samples are done right and there are enough of them . . .)

I ask because as I read this it certainly sounds like that could be involved here--gluten sensitivity can present with neurologic rather than gastrointestinal symptomology (ataxia, neuropathy)--and autoimmune conditions often come in clusters.

By the way, someone in your situation should probably have been screened for antibodies to nerve as well as the standard ANA-related antibodies:

http://www.questdiagnostics.com/test...lNeurop#Immune Mediated Peripheral Neuropathies

Hi again Enbloc. The point is that my ESR has been steadily rising over six months and is now at 78 (normal 0-10) - which is pretty high even for me. My CRP swings from low to raised to soaring back down again over a space of days so no it doesn't reflect my neuropathic pain really. But my ESR does seem to reflect the neuropathy perfectly - to the point I can predict exactly how high it is by the stiffness, nerve pain and how lousy and fatigued I feel.

My ANA was negative, as were my other autoantibodies apart from my rheumatoid factor, which was low positive when last tested a few years ago.

I'm told it is my high ESR which means I certainly have clearcut autoimmunty. My CRP usually hovers around 12/13 and is only usually checked occasionally.

But if my autoantibodies are the measure my neurologist relies on as you suggest then a) he doesn't know much about autoimmune diseases and b) I will never get offered Ivig by him. He needs to think outside the box with me because I'm very unusual to have this huge discrepancy between my wild CRP swings and consistently my high ESR. What these two consultants confirmed is that all this is definitely autoimmune - it's just how to get anyone to recognise or take responsibility for treating it.

Hope this makes more sense now I've explained in seronegative but very inflamed.