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.

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.

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,

Hi Mat52

If your Neuros are anything like the ones down here on the NHS I would suggest attaching written notes onto 6 inch nails and driving them into his skull with a large mallet. On my last appt I was saddled with a Registrar who was SO bad he thought he could contradict an MRI and a Consultant with 40 years experience - who ran 3 hours of comprehensive tests on me - with a 2 minute visual review.

I throw my hands up and dismiss them now, I would rather see any other Specialist. And this has been the case since 1997.

Despite this, I truly hope your experience is a positive one and your Neuro can reach conclusions which actually lead to effective treatment. I have followed your Posts, and you deserve a break.

Dave.

Hi again Mat52
When you say your other autoantibodies were negative I'm guessing that included adrenal autoantibodies which they probably would have tested because of the Hashimoto's. How long ago were they tested and how long have you had Hashimoto's?

Have you ever been given any information about APS? (Autoimmune Polyglandular Syndromes). This is when other autoimmune conditions develop after an original autoimmune disease.

Here's a link specifically related to Hashimoto's which may help you understand:

http://www.thyroid.org/wp-content/up...v238_14_15.pdf

Although the article is about a study to do with the prevalence of Addison's Disease with Hashimoto's there is info in the "Results" section about other conditions associated with Hashimoto's. The commentary is also interesting and may help you to present another medical opinion for your doctors to consider.

Gosh thanks for this - don't know about any of this and don't know which autoantibodies he checked but they never tested my ANCA for vasculitis and I thought that would be obvious. I will look these up and see if there's stuff I can make sense of. I'm so tired all the time my cognitive reasoning isn't that great. Thanks so much

[QUOTE=EnglishDave;1144973]Hi Mat52

If your Neuros are anything like the ones down here on the NHS I would suggest attaching written notes onto 6 inch nails and driving them into his skull with a large mallet. On my last appt I was saddled with a Registrar who was SO bad he thought he could contradict an MRI and a Consultant with 40 years experience - who ran 3 hours of comprehensive tests on me - with a 2 minute visual review.

I throw my hands up and dismiss them now, I would rather see any other Specialist. And this has been the case since 1997.

Despite this, I truly hope your experience is a positive one and your Neuro can reach conclusions which actually lead to effective treatment. I have followed your Posts, and you deserve a break.

Dave.[/QUOTE

Thanks Dave - if you've waded through my long posts I'm very grateful! My neuro is rather s serious man but he seems quite honourable. I don't think he knows that much about autoimmune diseases though. He's an expert on headaches so perhaps my more recent jaw/ mouth neuralgia may strike a chord. It's my rheumatologist I despair of. But your registrar sounds in a league of his own!

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