Life doesn't get simpler for me in my quest for answers and treatment. My appointment with new neurologist last week wasn't productive at all. She confirmed that I just have small fibre neuropathy and this has just led to some numbness and proprioception issues. She said I look too well to have a multi system disease so feels my symptoms just relate to my RA, despite this currently being inactive. She rolled her eyes when I told her I'd seen an endocrinologist who had added Lyothyronine to my longstanding Levothyroxine.

She shrugged about the raised inflammatory markers and paired bands and said this relates to the RA probably - quite common and I'm over thinking everything. I tried to ask her about Sjogren's and Mast Cell disorders but she said I have been diagnosed in the past with a serious disease already so why look further? She had read my rheumatologist's letter saying mild RA in remission so felt this was enough to explain. She acknowledged that there is now some widesoread numbness and burning mouth syndrome but says I'm too allergic to many medications to risk further immune suppression and I refuse to try more symptom treating nerve drugs because of side effects. The numbness is for life so I need to try to get more exercise, lose weight, take up yoga and tai chi and be thankful that my RA is non erosive so far. She will see me again in six months to a year.

I was so nonplussed by her bossy and dismissive tone that I forgot to tell her about five years of bad taste coming and going all the time - making my sense of taste and smell poor. I've written to tell her this although I'm sure she will just shrug and say this is just common too - especially in a post menopausal woman.

Meanwhile, in contrast, my new GP is quite concerned about my chronic constipation, stool changes and flank discomfort plus raised inflammatory markers despite no RA. I'm being tested next week for Coeliacs, Liver and pancreas problems plus rectal exam. Not expecting anything to show up. But good to know I'm still being investigated to rule out sinister stuff. As if small fibre neuropathy and disequilibrium with burning gums and Dysgeusia wasn't sinister enough?!

Wow, I can relate. Some of these doctors just aren't even capable of even acting like they care to figure things out or they just think they know everything. Seems like I am stuck between sweet ones who shrug their shoulders and say they wish they could fix me or know what caused this and the others who don't care about the cause and just tell me to take meds and deal with it.

I'm surprised you haven't had the celiac test yet. It was recommend that I have it done again since 7 years ago the tests have been much improved according to a gastro I just saw. I haven't had gluten for 1.5 yrs though, so I'd have to go back on it for the test which I am scared to do. I contacted Dr. Mullen who is a gastro at John Hopkins and told him my situation. He said that he doesn't think anyone with an autoimmune process should eat gluten. Have you ever tried to completely go off for 6 months?

Yes I've been off gluten completely before - lost lots of weight and had barely any IBS type symptoms. Then I came off Methotrexate and also had myself tested privately for Coeliac because this was when the stomach issues took off and the neuropathy started as pins burning pins and needles and shooting pains. I was misinformed by the private clinic in Edinburgh - who said that because it was an antibody test I didn't need to eat gluten prior to being tested. My IgA was raised - same again last year - but the antibodies were in normal range so I assumed that my tummy problems were because of GORD and my gallstones. Had a gastropy last year but nothing showed up apart from some staining which the theatre nurse showed me afterwards. However the horrible surgeon (a macho bully) hasnt acknowledged the reflux staining in his summary and no photos to check. I have since moved to a new area well away from this hospital and surgeon and I don't think the new ones believe how much falsification went on in this remote hospital!

So new GP is a bit concerned about my forever fluctuating CRP and PV/ ESR and often high total protein. I think she wants to rule pancreatic or liver disease out. Now that my gallbladder has been removed it can't get the blame for everything and she thinks it's worth retesting for Coeliac. But she's only prepared to give me two weeks on toast before testing. I don't think it will show positive after such a short time but her view is that I've been breaking my gf diet quite often as we are fairly nomadic at present - so a few weeks of full on gluten should be enough to get an honest result.

We are in quite similar boats i think. The thing that I just don't get is how the neuro can say it's all rheumatology related SFN and the rheumatologist can say it isn't. Meanwhile I'm going numb?! I actually scalded myself yesterday near my throat because I couldn't tell how hot some soup was until I felt a blister flapping about near my tonsils!! Why is it okay for nerves to be dying but a serious business when other organs and joints are affected?

and that's the best of them.

Mat, I think it is time for some DNA testing for MTHFR.

I don't recall if you have posted that you have had this done?

People who have these mutations (there are several of them) cannot repair tissue, have nervous system symptoms, and all sorts of problems). Homozygous carriers( one copy of the errors) develop symptoms slowly and later in life that heterozygous (2 copies of the errors).

As time passes, here on NeuroTalk, more members are getting this test and turning up learning their puzzling problems are related to a MTHFR mutation.

Thanks Mrs D. I did have my homocysteine and MFR (I think this was the name - the other test for B12 levels) done privately three years ago when my SFN first started. They both came back within range. I think my rheumatologist and the last neurologist have pretty much covered all the DNA tests that are done in the UK. This isn't to say I am sure because I don't receive print outs of all hospital results - only the ones done in the local lab. Some of these tests can only be done in the London lab and these are just described as normal by my specialists.

I had my serum B12 tested two months ago and it came back at 628 so I defintely wouldn't be seen as having B12 deficiency/ PA. I pointed out to the neurologist last week that my IgA was raised in 2013 and again last year but she just dismissed this as me reading too much into blood tests and said everyone would have a few off results if tested often but told me I'm over thinking it all. I think the introduction of Liothyronine is helping a bit with my energy levels and general wellbeing though - perhaps it is actually making the T4 do its job. And perhaps I will feel further improvement to other symptoms over time. But the endocrinologist also told me that I would never recover the sensation that the SFN has killed off now.

So despite being warned not to overthink and look for reasons for my SFN that apparently don't exist - I still plan to keep researching and tweaking as I see fit. I think anyone with an enquiringly mind and the gradual loss of sensation in their peripheries would. You have helped me a great deal with my quest for answers over the past two years and I'm very appreciative. I particularly love your Galileo signature and mutter it to myself inwardly every time I come across an indifferent or dismissive doctor! Mat x