Thanks for responding Mrs D. I only have access to my new rheumatologist via the NHS for now. My skin biopsy was sent to one of the best immunologists in this part of the U.K but only occasional deposits of IgM showed up. I haven't tried antihistamines for a while but that's a good suggestion. I used to live on them when I was younger as I've always struggled with insomnia and with allergies. Now it's just the insomnia and this awful parasthesia. I'll get some antihistamines over the counter and see if they help. Many thanks!

I'm using a natural toothpaste that i bought in a health food shop now Caroline2 - had high hopes for a week but now the burning in my gums and awful tight sensation in the front of my mouth and nose is back with a vengeance. Not to minimise your experience but I guess that you do at least know what triggered your PN symptoms. Mine are just so widespread now that it's as if my peripheries and face were full of that stuff that pops in your mouth - space dust we used to call it as kids. I get so paranoid about foods and all medicines now. I need to know if this is the legacy of a drug intolerance or part of my autoimmune problems before I agree to try anything else.

Obviously I don't know why you are experiencing all this nerve issues and you said you don't know either. And yes I know my issue came from hip surgery nerve damage.

I don't tell anyone what "to do" I suggest to my friends and family and they see my enthuasium and my generally good health. I can only say why not give grape seed ex a good trial and see IF you can get some help from this OPC. My friend has as I said and she's had nerve issues for many years.

I am so in tune with what grape seed ex has done for me for 2 decades and I listen to voices and know especially when an older person takes OPC's they have strong clear voices as their blood and circulation is working so much better. It's hard to get this across online but this OPC is short of a miracle and maybe some kind of a miracle too.

My grandkids 15 and 18 both take it for general health as does my daughter who is 52, they are hooked.

Anyway, that's how I feel....if you take a pharma blood thinner then you can not take both.

Thanks Enbloc. I was hoping the same re new doctors. I'm so busy just now and it takes such a superhuman effort to keep fighting my corner.

I do have a new rheumatologist and I saw him two months ago. Unfortunately the wretched NHS cutbacks have meant that there aren't enough typists to type up his letter so I'm still waiting to hear back from him. I did phone the rheumatology nurse helpline in this hospital and the nurse asked him if he could shed any light on my worsening parasthesia and horrid mouth discomfort. But apparently he said that my low inflammatory markers meant that I wasn't flaring up and therefore any symptoms must be dealt with my my GP ie not part of the systemic process. Not very confidence inspiring somehow and this new GP said that if any of my autoantibodies had come back positive then the rheumatologist would have contacted us by now.

So I'm not feeling very positive really. I think that this is a small country and the rheumatologists and neurologist are closing ranks - keener not to undermine each other than they are to help me. And because I'm part of the NHS I haven't got access to the more specific breakdowns of my skin biopsies although the rheumatologist was quite interested to have a copy of a result from a skin biopsy of my neck in which an immunologist found IgM deposits a few years ago. I do have my immunoglobulin test results back from this rheumatology consult 9 weeks ago and they are all within range, albeit at the higher end.

So I don't think they are going to investigate my neuro symptoms any further and so I'm really hoping that things will become clearer (in a tangible way) once I'm off steroids. I haven't had any more infections or GI problems since recovering from the post gallbladder operation and the pancreatitis and anaphylaxis have just been listed on my notes as "mild allergies"! I think I'm going to have to keep away from all doctors until I just can't.

I'm determined not to get landed with fibromyalgia as a diagnosis so avoidance seems the only way just now. I do see another oral surgeon sometime and my rheumatologist again in January. I'm also having my bloods checked because the Ace Inhibitor I'm now taking for hypertension has made my kidney function dip a bit. I keep wondering if I actually have Lupus but now that one professor has said that I can't have due to my age and stage - none of the others will put it on the table as a possibility.

A friend told me recently that a really close friend of hers was told over and over that her symptoms were a product of her mind/ anxiety for about 15 years. Then, in her mid sixties she was retested for Lupus and bingo it showed up positive - by which time she had sustained such severe organ damage that she died a month later. Horrible story and I admit that it does haunt me a bit. However I'm really not sure what I can do now apart from continuing to tweak my diet and take the odd sleeping pill.

You'll want to choose the newer antihistamines, as the old ones can cause dry mouth --which you don't want.

Ask your pharmacist to recommend the UK equiv. of Claritin or Allegra.

The second column has the types you should look at in UK...
http://patient.info/doctor/antihistamines-pro

After reading another thread, I have to ask...have you considered Lyme disease as a possibility? Your symptoms (to include odd infection reactions) could fit right in line with Lyme. According to a couple articles I've read, Lyme incidents in the UK and Scotland have increased significantly over the years.

You would reallly need to have a LLMD for proper testing. I think it's worth considering.

Sorry for late response enbloc. I was tested for Lyme with a lumbar puncture in January - I think it was called cryoglobulin - my neurologist had it done and it was negative. I would have been surprised if it had shown up positive. There are no deer or Lyme in the part of Scotland I've lived in for the past 26 years and I've never come into contact any tics as far as I know. The area of Scotland I've moved to,on the other hand, does have Lyme, although not on the same scale as in the States. My cousin who lives in France has it so I'm aware of the symptoms it can cause. Many thanks for the suggestion though it would make a lot of sense of my symptoms if I had it.

A leading immunology and rheumatology professor I met yesterday (he was giving a presentation to a small group of us with RA) said that he believes that the early stages of acute disease activity can cause subtle erosions that probably would only show in MRI. He thinks that for some people the inflammatory process causes a problem in the neuro pathways which in turn causes a kind of chronic pain disorder for some.

Not psychosomatic - he didn't mention Fibro - and also said this wasn't the same as neuropathy so it probably wouldn't show in nerve conduction studies. He mentioned Vasculitis which most people with connective tissue diseases will have to a greater or lesser extent. It was very interesting although he admits that he is usually not able to help or treat patients with this type of pain effectively as the neuro response has already been triggered/ set in motion during a phase of very active disease.

I would ask for another blood pressure medication. The ACE inhibitors, increase bradykinin in the tissues.... causing swelling and inflammation. I had a huge reaction to lisinopril... and now I have a diagnosis of hereditary angioedema, + drug induced lupus.

So ask for another family of drugs (no ACE drugs).

https://en.wikipedia.org/wiki/Bradykinin

Some people just cannot handle ACE inhibitor drugs.

I've never heard of this before - I will try it if i can find some. Thanks.

Thanks Mrs D. The GP who prescribed it thought hard about it because she knows I have a connective tissue disease. I don't feel I have any side effects from the Ramipril at all - no lightheadness or worsening of symptoms. But simultaneously I am now down to 1mg Prednisolone so put most adverse symptoms down to this taper and am focussed on getting off it fully soon. I have a full blood count taken on Tuesday with my BP to see if Ramipril is okay for me as my kidney function had dipped last time. So they may take me off it anyway if eGFR still low.