Hi all and hope you are all as well as you can be. Winter can be a pretty tough time for a lot of you I know. It's been a while since I have posted here as I've had my struggles and also those of my daughter who, some of you know was diagnosed with rheumatoid arthritis recently. She has now been told she possibly has some form of vasculitis as well due to a positive ANCA and she is awaiting more testing. It's really hard when it's your baby suffering and as well as having some other non medical problems and worries, it's been a real struggle recently.
I was doing great up until early summer, in fact, I hadn't felt so good in years. Then I got laryngitis followed by a very painful infected tooth abscess and my methotrexate was stopped. I was off the steroids at this point so was taking nothing but hydroxy. 3 courses of antibiotics later and the tooth still just would not heal. It was a particularly nasty extraction but it took 8 weeks in total to start healing. My GP now would not restart my mtx so I had to wait another 8 weeks till I saw my Rheumatologist again and by this point, all the familiar symptoms were starting to return.
Steroids and mtx were started again but seemed to take ages to kick in and although I'm now slowly improving in some aspects, it's not touching some of my symptoms.
One particular symptom is really worrying me and no doctor has a clue, so I'm hoping that with all your wealth of knowledge, someone will be able to advise me.
Some time ago I was diagnosed with air trapping on a CT scan due to small vessel inflammation. This used to cause me problems breathing sometimes as it felt it was an effort and didn't seem to occur naturally. It felt muscular. However, 2 visits to chest clinics along with air flow testing and a CT review and I was told everything was fine. Both times. No air trapping. I still got the symptoms now and again and still believed I had this problem but carried on regardless. Till 2 months ago. I was due to have a G I physiology test of a probe down into the stomach to measure dismotility and contractions but I couldn't tolerate it due to a painful burning sensation in my nose and upper chest that it caused. It was like my whole upper body was on fire and this probe is far smaller than an endoscopy one. It settled down pretty quickly though and I tried it again 3 weeks later but the technician couldn't get the probe up my nose. He said it felt like there was a blockage and didn't want to force it so again, it did not get done. I put this down to inflammation as my meds hadn't yet kicked in and I do get burning nose. However, this burning is now in my chest making breathing difficult, also around the diaphragm area and stomach area although it's not, as far as I believe, stomach acid. My whole front body is burning and so is my nose and hurts like hell. I'm mouth breathing to stop the nose burning. One GP said it's stomach acid although I take my meds for this religiously and another 2 said they didn't have a clue but ruled out pleurisy, diaphragm problems and chest wall inflammation. My lungs are clear and it doesn't hurt sharp when i take a breath in like it would with a chest infection or anything. Besides, the pain doesn't feel like it's in my lungs, more all over my chest and radiating into my abdomen. Is it just deferred pain? But from where? Chest or tummy or somewhere else? I read that burning nose can spread down the breathing passage but I don't know if this is correct or not but how would that hurt my tummy? I can't help but worry that it's a nerve problem and I'll eventually be in respiratory failure. Might sound a bit drastic but I really don't know what else to think. I've googled till i'm ready to drop and even spoke to friends with auto immune things and no one seems to have a clue. I have also recently been diagnosed with PMR on top of everything else and had vasculitic rashes on my legs which my Rheumy said was most likely due to my spider veins and wasn't too concerned. Could this be a vasculitic thing connected to that? Can anyone help or does anyone have any ideas to stop me panicking? I'm really quite scared.
Thank you all XX
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Georgie-girl
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Georgie I’m really sorry about your daughter’s problems - I’ve missed you and wondered where you had got to.
By strange synchronicity I have had very similar issues to all you describe - apart from with my “babies” thankfully.
I was due an extraction of front molar which has suffered two abscesses during root canal when I was 18 and 19. Then the one next to it had root canal about 8 years ago and both have been causing me jip. So I saw young dentist who was apprehensive about replacing decaying root canals knowing I have Sjögren’s related neuralgia and neuropathy around my face - as well as everywhere else. So we decided on extraction as no risk of further abscesses - which you will understand that I dread.
But I decided to see my oral med consultant to check this was the right thing re facial pain - which also affects my nose and seems to cause my constant tinnitus too I think.
She decided that extraction was a bad idea as no infection in x-ray so she wrote to my new neurologist saying she didn’t think my pain was dental related and thought existing dental work should be left well alone.
So my new neuro is having me tested for Trigeminal Neuralgia types 1 and 2. Type 2 is apparently a kind of sensory ganglionopathy unique to Sjögren’s.
So now to the breathing issues and GERD - I seem to have these too with a nasty sticky cough. I have phoned NHS out of hours twice in a week when the chest and abdominal pain has been too much. Like you they can find nothing wrong with my lungs or wheezing of asthma or pleurisy so I’m to have urgent gastro apt next week to discuss gastroscope. I had s barium swallow over a year ago which excluded gastroparesis or blockages but the problem is getting much worse despite all the treatments for reflux and now a scary anti-emetic which I posted about this morning. I’m none the wiser and also have an upper UTI again so every part of me is in annoying amounts of discomfort and tight band of pain. The weird breathlessness is horrid.
I have wondered if I might be anaemic or have a rare form of autoimmune atrophic Gastritis perhaps? This can apparently be associated with Hashimoto’s and Sjögren’s and I have both.
So I came across this by googling in the early hours while sitting clutching my chest is the out of hours hospital clinic last night. I don’t know if I’ll be brave enough to suggest it to the gastro next week but I am getting too sick to put up with anymore flannel about just keeping on taking PPIs and Ranitidine to max dose while still having symptoms. Maybe it applies to both of us?
Yes Hidden ...be brave and ask your gastroenterologist the question about the possibility of autoimmune metaplastic atrophic gastritis....it's an entirely reasonable question to ask and they shouldn't be surprised.
Biopsies taken during the endoscopy can test for this and it might also be a good idea to ask them to check your gastrin levels too (they don't always do this - though perhaps they should).
They can also test for heilibactor pylori (gastric bacteria) which can cause atrophic gastritis, which can ultimately lead to the development of autoimmune metapalstic atrophic gastritis (the 'end game' in a range of atrophic gastric conditions).
Here's some information I've found that might interest you both...
Inclusion body myositis in association with vitamin B12 deficiency and Sjögren's syndrome…may explain neuropathic features of some patients with inclusion body myosotis [may also be associated with neuropathic features associated with Sjogren's] [ whisperit - this might interest you if you haven't seen it]
[sorry, the above are abstracts only - full papers are behind firewalls 🤨]
Just a to further clarify points made in the MSM manual in your links above (just in case it helps 😉)...
1) Autoimmune Metaplastic Atrophic Gastritis (AMAG): A more appropriate (and increasingly adopted) name for Pernicious Anaemia (Pernicious Anaemia is a bit of a misnomer since it's no longer 'pernicious' - deadly (when treated) and anaemia (macrocytic) is not always present in those who have it - appears later/last in the disease process.
2) AMAG (pernicious anaemia) always leads - eventually and inevitably - to B12 deficiency (since the liver holds B12 stores for several years, it can develop slowly - as it surely will. The symptoms of B12 deficiency often present before serum B12 levels drop below the reference range (including neurogical symptoms).
3) Atrophic gastritis can also cause B12 deficiency - if due to heliobactor pylori (HP) that is treated before gastritis gets to the AMAG stage, then this can be rectified by treating the B12 deficiency and eradicating the HP (long term B12 injections may not be necessary)
4) B12 deficiency can caused by any form of gastric atrophy (even if PA is not present): megablastoc (or macrocytic) Anaemia is not always present and 30% of those with neurolgical symptoms have 'normal' B12 levels (often catches doctors out because many have a poor understanding of pernicious anaemia and B12 deficiency, which can have many other cause too (coeliacs, Crohn’s, GI surgery...et al).
5) Subacute degeneration of the spinal cord occurs due to untreated or under-treated B12 deficiency and is caused by damage to the myelin sheaf that surrounds nerves. Neurogical symptoms usually appear prior to this (peripheral neuropathy, parasthesia, loss of balance, parasthesia, Tinnitus...and oh so many more...)
6) AMAG is associated with low stomach acid, which has the same symtpoms as high stomach acid 🤨. Those with PA most often have low stomach acid - but are prescribed PPI's or H2 antagonists - which suppress acid production further and just makes things worse (if antacids in any form do not work, low stomach acid is the most likely reason). Interestingly, those with pernicious anaemia are more prone to infection with HP - nobody really knows why but perhaps due to low stomach acid, so it’s a bit of a vicious circle (I've now had it three times).
So...it's all quite complex and little understood by many doctors since many have no training in this area (even at a consultant level). There's also a complex link with other autoimmune conditions (Sjögren’s, B12 deficiency, AMAG (pernicious anaemia), Hashimoto's, myosotis...et al, ad infinitum 🤨.
I got embroiled with this when I developed B12 deficiency (which was untreated and then undertreated), acute on chronic gastritis, HP, gastric reflux, peptic ulcer disease...(the UCTD disgnosis came along shortly afterwards so...hmmm 🤔🙃).
So Twitchytoes and Georgie-girl go ask the questions and good luck to you both. Be really interested to hear how it goes🤔😀.
This is so very helpful - although as you are saying - I doubt that my doctors will do more than basic investigations and this time last year my serum B12 was 1475 so they clearly aren’t thinking I’m at any risk of B12 deficiency! I was taking it orally but not very regularly at the time.
But I have looked into this high B12 number briefly and it seems it might be so high because I can’t convert/ absorb B12?
However I can’t see how I’d ever convince my doctors of this. It’s hard enough getting them to remotely understand Sjögren’s. I haven’t met this gastro but he seems to have knowledge of liver diseases from googling his name.
I will read these links tomorrow and as I’ve already put the atrophic gastritis on my list did GL with a link. X
Yep...B12 is a tricky issue...taking oral supplements (even briefly) can skew serum B12 tests for up to six months, so that could explain the high B12 reading.
The inability to convert B12 (called functional B12 deficiency) is quite rare but nevertheless a possibility. MMA test would usually clarify this but again, this would be skewed because of the supplements...B12 influx rectifies high MMA levels very quickly.
However, if you do have a functional deficiency, MMA levels would be high irrespective of taking B12 supplements (but if the result was normal, you wouldn't be able to determine if B12 deficiency due to absorption problems is an issue - until all supplements are out of,your system).
Consistently falling B12 levels (six months post-supplementation) would be the thing to watch for...and of course symptoms of B12 deficiency. Though that's a bit of a devil because they're so similar to the many symtpoms of autoimmune disease. Rock and a hard place 😳.
The sure way to tell is to trial B12 injections and see if they help with any of your symptoms...though this may take some time and it's often very difficult to get doctors to prescribe it for long enough to see if it makes a difference (healing takes some time, especially if neurogical symptoms are concerned).
You could try pointing out the potential connection between Sjögren’s and B12 deficiency. One member on another forum I belong to stated that her ENT consultant told her that issues with her non-functioning salivary glands would result in B12 deficiency - and yes, she had a severe deficiency (though there were other factors too). And if AMAG (or atrophic gastritis or HP) is present on your gastroscopy, then that’s a confirmed dignosis of pernicious anaemia - and treatment with B12 injections should be automatic and immediate (and intensive, because of your neurogical symptoms (may be Sjögren’s related but if PA is found to be present, then why take the risk and not treat intensive - just in case 😉).
Afraid I get quite passionate about B12 deficiency and PA simply because so many have it and fail to get diagnosed or treated properly. And it's so much more complicated when conditions are present...especially autoimmune ones (the symptoms are so similar so masking's a big risk).
And forgot to say above, parietal cell antibodies are no longer recommended as a test for PA (in the UK)...too many false positives. uK recommends Intrinsic factor antibodies - highly specific for PA so a positive confirms the disgnosis. However, 60% of those with PA test negative - so a negative can't rule it out (called antibody negative PA - AbNegPA - bit like sero-negative Sjögren’s 😉.
And just to make it even more complicated...AMAG (pernicious anaemia) and Sjogren,s aside, the absorption problems associated with GI symptoms alone (sic) often suffered by those with AI can also lead to B12 deficiency...but just try getting a doctor to understand or believe that...😱
Really hope you get the gastric 'stuff, sorted out Twitchytoes. Nobody can understand how nasty it is unless they've had it. And it's why I'm sitting up at this hour chatting to you...delaying the burning acid rush that descends at laying down bedtime...😱.
Best of everything with the gastroscopy...hope you meet one who's knowledgable about all things 'gastric, B12 and PA...and that you're treated infinitely better than last time 🤞🤞.
Will look out for your updates xx
P.s. Georgie-girl ...apologies for chatting away to Twitchytoes in your post - but hopefully not off-topic and may be useful for you too 🤞xx
Yes this is absolutely spot on for me Foggy so I hope it might be for Georgie too as don’t want to hijack anyone’s post.
The thing that rings ever louder than my tinnitus to me is that if I do have PA then this would explain why I’m lying in bed with awful Gastritis (it’s too low down for GERD as it stretches down into my pelvis now) again despite taking Lansoperazole yesterday as ordered and despite being semi propped up - a little more each night.
The gnawing pain stretches right down into my rectum but isn’t related to wind or food really. I’m going to ask GP to run some tests for CA125 plus biochemistry for renal, electrolytes and discuss the gastroscopy consult as this state of being up half the night with Gastritis can’t go on I feel. I’d willingly suffer having endoscopy biopsies for Ceoliac and AAG if this would give me clarity and hopefully relief.
PA would also why other symptoms are worsening daily - in particular my tinnitus. It’s getting steadily louder daily and no one can explajn this to me at all. Not that I’ve mentioned that it’s been much louder ringing to anyone, particularly at night. But it has.
I will definitely speak about this with GP later this morning - I feel so sure that - even though I’m only showing mildly anaemic I (high RBCs with low MCHC - latter not my usual) that B12 deficiency would explain so much. Unfortunately I panicked a few weeks ago and, having not touched B12 for over a year - I took it again for 5 consecutive days. Would this be enough to skew it? I’m guessing it would but it’s unreliable anyway.
When my neuropathy first started I did research with a very helpful person called Hamster who used the Thyroid UK HU. She worked out that I was in folic acid daily as Methotrexate agonist and this would totally skew my results.
So I had MMA and Homocysteine done privately along with others including vitamin D. This was about six years ago now. They were okay but I think she still had some misgivings for me. Of course things have all worsened apart from the RA which eased up with intro of AdCal D3. I’ve been wondering about asking GP to request this too and calcium.
My thyroid bloods are never quite right either as, despite higher Levo dosage my FT4 and 3 are still low in range and I bet my vit D is too although not critical as it was when privately tested.
Yet when I asked my old GP over and over if this could be resolved with B12 injections he ended up nearly shouting “don’t you think that if we thought we could resolve this for you with B12 shots we gladly would?’. But I didn’t understand why they paid loads to have give me referrals and flights to neurology on the mainland and switch me to more expensive MTX injections - but not just test my Vit D and agree to a trial of B12 injections.
Surely they aren’t expensive comparatively? I’d say ignorance is bliss but it’s actually the very opposite! Sorry GG I’ll stop hijackjng now I do promise. Xx
low RBC's can be caused by chronic Inflammatory conditions and low MCHC by iron deficiency anaemia (amongst other things). Both of these conditions cause small red blood cells (microcytic anaemia) - and the presence of small red blood cells can mask or 'hide' the macrocytic (large) red blood cells that most GP's think must be present in B12 deficiency. Red cell distribution width (RDW) can clarify - towards top end of range or over indicative of mixed macrocytic and macrocytic cells and can therefore 'expose' macrocytic anaemia.
Plus - taking folic acid when B12 is low can also mask the presence of B12 deficiency ('fixes' macrocytic anaemia often (wrongly) associated with B12 deficiency) and can therefore result in neurolgical damage due to untreated B12 deficiency. (Potential for GP misinterpret tests you had six years ago.
If you’ve taken high dose vitamin B12 tablets then this may well skew results....however, there are no gold standard tests for the diagnosis of vitamin B12 deficiency or PA...symptoms should play a large part in disgnosis (much like autoimmune - doesn't happen as often as it should do).
Worth noting that if you have absorption issues, the tablets or sublingual will not be sufficient to treat approaprately - especially neurological symptoms. B12 injections will be required.
And yes...you're right. B12 injection’s cost less than £1 but instead of prescribing, the NHS spends hundreds of thousands of pounds sending folks for potentially unnecessary consultations and tests - while exposing patients to potentially irreversible neurolgical damage. All for the sake of a little knowledge and £1 injections!
Many who approach GP's about B12 deficiency do get frosty responses (often hostility and yes, shouting too). Even when presenting the latest BCSH, BMJ and NICE diagnostic and treatment guidelines (often referred to as rubbish from the internet!). Dreadful.
Bottom line is that B12 deficiency can be caused by many things...Abosption issues causes by GI or Sjogren issues (bit of a moot point whether caused by AI factors or PA 'cause the outcome is the same - B12 deficiency).
B12 is safe, cheap, and a very effective treatment. Perhaps your GP would consider trialing B12 injections (flash the above abstracts under her nose)...know your case is complicated but surely better for her to err on the side of caution, especially where neurolgical symptoms / damage is a potential outcome...or so you'd think 🤔.
Thanks so much. I’ll post on here with GP update to avoid GG getting bothered by more of our conversation. Sounds like she has enough on her plate but I’m sure the info you’ve given us both will have been very useful to her as well. X
First, let me start by asking why on earth you are apologising for "hijacking" my post? We are all here to help each other as well as ourselves so if you have managed to help one other person by your links and conversation, then that's great. I too found it very informative and helpful so thank you for posting and please, do not apologise for chatting on my post. No apology is needed, just glad it may have helped.
Secondly, my dear Twitchy.
Thank you for your kind words and I'm so sorry you too are going through the wars at the mo. I have always said we are so similar in our version of autoimmunity and the fact that I can't even have a tooth abscess without you confirms this haha.
I so sympathise with your gut problems, I know about them only too well and I, like you have had so many different meds, seen different gastros and am still suffering. My last barium swallow showed up my dismotility and cervical spine lordosis but disproved the web that doctors suggested I had and my last endoscopy showed the dismotility and gastritis, but other than that, there is no clear answer as to what or why I suffer. This is why my new gastro wanted to do the physiology testing to see how the nerves and muscles were working but my inflammation and burning nose wouldn't allow anything up my nose or down my throat. I really hope you get some answers from your endoscopy and that whatever it is, they can treat it and give you some relief. Boy you have suffered enough here. Do make sure you tell them everything and all your concerns to make sure they don't miss anything.
As for the breathing, once again we are mirroring each other except you have a sticky cough. I don't have a cough just this horrible burning from my nose down into my chest and stomach and it hurts my muscles to breathe. It's like the nerves to my diaphragm or something are week but doctors tell me I'm being ridiculous as diaphragm is fine and so are my lungs. I asked if it could be vasculitic as I keep getting these type of rashes on my legs but again im told no, so what is it? As usual, we'll just keep plodding on going round in circles suffering till something happens to confirm what we have been saying all along.
I feel for you dear Twitchy I really do. And all this while your sjogrens is inactive? Bloody doctors make my blood boil at times.
Oh well, I guess I should prepare for my next UTI as I haven't had one for a while and you have
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