Oral surgeon says "Breeding ground for bacteria" and "your immune system must be taking a beating"

I got into my car crying as I left my oral surgeon's office. I needed to get away so I just drove. I turned left instead of right and I ended up at the Peace Arch boarder crossing. I didn't have my passport so I parked my car and sat under the Arch and cried. I need to have both my root canals extracted and my oral surgeon can not believe how I do not suffer from chronic sinus infections. I can't remember all he said, but I think he said something like "it looks like you have a silent abscess or the paste they used for the root canal is pressing on/or in your sinus cavity. The xrays show a lot of fluid build up...a breeding ground for bacteria..." I wish I brought my daughter with me for a 2nd pair of ears.

I have been complaining about my upper molar since I had a root canal back in April or May 2008. My dentist always said I have no new infection, so she just filed down my crown. Eachtime I complained about my root canal, she just filed down my crown. I guess I got used to the pain and 'sucked it up" as it was deemed to be "all in my head".

Anyways, within one month of my root canal, I got my first RA symptom of swollen painful feet. Of corse this too was "all in my head" as I searched for a 2nd, 3rd and finally a 4th opinion.

I am just soooo angry. I asked my oral surgeon if this is the trigger/cause of my RA. He said he doesn't know , but he says my immune system must be "taking a beating".

Your thoughts?

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  • It really makes my blood boil this,some Doctors and Consultants are just as bad at times and we all put our faith in them because they are supposed to know better,sometimes I wonder😡

  • I'm just so angry, All the ear infections, headaches and yes, a few sinus infections I've had over the last 31/2 years.

    I do hope my immune system sorts itself out after the extractions and my RA just "goes away." The doctor says probably not, he thinks it will help settle my symptoms down though.

  • Hi Suzanne,

    Sorry you've had such crushing news. I would be thinking the dental work had possibly caused the RA. Perhaps it might have exacerbated it, rather than caused it...

    I think I can see the torment you might be under. Along the lines of the whole base character of your understanding of the you and the disease has shifted. That, I think, is how I would see it.

    Did he say there is an infection currently? Surely some antibiotics would be appropriate to ease discomfort and reduce any infection. What does your blood work show? An indicators of infection?

    MJ

  • You know me sooo well MJ!! The words you wrote

    "....I think I can see the torment you might be under. Along the lines of the whole base character of your understanding of the you and the disease has shifted. "

    I don't need my thoughts about auto immune diseases to be right, I'm willing to shake a dead chicken over my head to cure RA :) hahaha

    Since being diagnosed with RA, I always assumed my trigger was stress, now it shifted towards dental work. The fact of the matter is who cares how it started? Why do I search for the reason why I have RA? I guess I just really want it to go away with the rotten dental work I got.

    My mind know that It's obviously coincidental my bad dental work and RA timing....but there is no harm in hope is there?

  • Wouldn't it be fantastic if the RA were to go once the canals are sorted!

    I guess the purpose of understanding where it came from would be to have an understanding of the nature of the beast. Fundamental to us as a species is to ask were the 'thing' has come from (thing = anything that vexes).

    Now that there's been a shift, other avenues of investigation have opened up due to the movement of ideas and relationships in your idea of the disease. Do you like discovery?

    MJ

  • When it comes down to it, I am hoping that I have a 31/2 yr infection that shares symptoms with RA. I hope I was misdiagnosed. The idea of being misdiagnosed with RA is what makes sense to me if my symptoms "just goes away..."

    I have the upmost respect for the scientists of the world working on RA. I have no respect for people pushing their "miracle cure" for a price.

    I hope I'm not seen this way. I just happen to have some bad dental work that needs to be extracted ,...and (fingers crossed) wouldn't it be lovely if my diagnose of RA was wrong? I'm hoping that I have an infection that symptoms just happens to resemble RA. Wishful thinking, I know.

  • I may be being ignorant here but it doesn't Make sense to me just questioning "environmental" factors.

    My understanding is (was!) that RA, like AS, is genetic in nature and it may well be that environmental Factors act as a conduit , can trigger the disease ?

    Regardless, I really feel for you suzannedale and hope that one day this dreadful disease and the questions that run alongside it, do indeed just leave you.

    Marie

  • You aren't ignorant Marie. They don't know where RA comes from or even if it is genetic. The dental & RA connection has been a theory since the 1820's.Nothing has been proven....but I just hope to be the one to prove it. lol....I know wishful thinking.....

  • You seem very tenacious - if anyone can, I'd say you have a pretty good shot!

    I do understand the link but to me, the link appeared more about infection - wherever in the body this occurred , be it teeth or toes .

    I'm with you in just finding it not a cure, treatment less damaging to us as even the more effective treatments that can transform our quality of life, to me, come at a significant cost to our bodies.

    Wishing you the best on your quest.

    Marie

  • Haha Tenacious or foolish? I haven't made my mind up which one describes me the best.

  • It is never foolish to hope and to seek so I will stick with tenacious .

    Marie

  • Hi Marie - I agree - The area of the infection probably doesn't matter. But what keeps coming to my mind is that we (people in general) have never really given much thought to our mouths and how they affect our entire system, so no testing or whatever. And they really couldn't test it, because it would be cruel to make someone suffer with a tooth infection just for a clinical trial if you understand what I mean (not sure I am saying that clearly).

  • No, I inderstood that perfectly

    And I fully agree - that would be the equivalent of torture to me!

    I think you're also right ( as are others) in relation to the mouth but the bit for me was the infection as opposed to the source of the infection - bearing in mind, some infections are so low grade we may not even experience it as infection?

    Marie

  • Absolutely. And as Sue said, I think we just "suck it up" in order to keep on with our lives whether it is a sore tooth, sore knee, feet that don't work or whatever. We are a pretty adaptable species overall =)

  • Absolutely. I think I've truly learned the meaning of resilience!

  • It they may still be there and therefore be the silent trigger so to speak. Couple with this, the genetic Aspects to RA.

    Therefore to me it's just not easy for me to understand the notion that it would just be one thing? Now I'm not sure I'm making sense!!

    Marie

  • You are making perfect sense. I guess the answer is that if the answer were that easy, and the same for everyone, maybe someone would have found it by now? But also, maybe each piece helps a little

  • You are making sense to me Marie. I will let the medical community sort the reasoning behind RA. I think maybe a small percent of people are misdiagnosed with RA because it has similar symptoms? Maybe this is why some people swear on their mother's grave they know the "cure"?? Who knows. I am just hoping to be one of the lucky ones who was misdiagnosed with RA.

  • And for that, I'd seriously try crossing my fingers for you!

    Wishing you the best

    Marie

  • Surely just a swab when an oral infection was present could suffice?

    We could even do it ourselves & drop it off at a lab with a test form filled out by the doctor/dentist for what test to make...prior to any infections!

    In UK a lot of health care seems DIY these days...so why not?

  • Hi AC - Yeah - Me and my DH are very much DIY health types. We do as much as we can to stay out of the healthcare system. Not always easy.

    I don't know if a swab would work if the infection was elsewhere... My dentist deep scaled my tooth, and they cleaned and inspected me every four months, and it was still not seen until it got pretty bad. So, I'm not sure of the answer there, but it is an interesting exercise, huh?

  • Thank goodness fillings are the worst dental treatment I have ever had!

    When I was a child my mother was terrified of the dentist...but as he lived next door I used to take myself off to him on my Own!

    That would probably be classed as child cruelty these days...but I thought it was very grown up in the 1950's!

  • Yes AgedCrone it would make sense to just do an oral swab for bacteria.but, I think the problem is that the infection may be in the blood system from the tooth.

    My blood test says I show an infection or RA. Then it states that 25% of people diagnosed with RA are seronegative so it relies on a rheumatologists knowledge. All 3 of my rheumy's scratch their heads as why I am in so much snowballing pain when I look to them as mild RA.

  • Have you had the CCP blood test?

  • I have the CCP (hs) blood test nad it now reads .5 it was 10 before the mtx kicked in.

  • Yes you are saying that clearly Carey.

  • When I was first diagnosed by a professor of rheumatology ...one of the first questions he asked was did I have allergies as a child.....sure did ...really bad Hayfever & urticaria & asthma & excema affected cousins.

    He said they all came from the same root as RA!

  • Yep - They are all Autoimmune related....

  • I suffered for about 10 years with cat allergies. Once I started mtx, my feline allergies are gone. I never thought of allergies as auto immune...but of corse they are.

  • I'm a nerd as I do love a good mystery! But I require scientific proof before I believe anything.

    I do have my own beliefs and I do stand my ground, but I am OK with being proved wrong. Knowledge is a good thing and I like a good debate as long as there is scientific proof behind it.

    I believe RA just happens to people and I am greatful that Universities around the world are seeking a cure. If it is proven that eating used cat litter on tuesday cures RA, then pass the spoon. :)

    Sue

  • That's the bloody spirit!!!

  • Yeah - Me too with the dead chicken - even at midnight in the snow in the woods - not nakie - that would be going a little too far even for RA - ha ha

  • Poor you. But at least it shows your immune system fights back if it's pushed away sinus infections.

    There is a relationship, but not completely determined which is the chicken and which is the egg.... here's an example.

    arthritis.org/living-with-a...

    My root canal and dental problems came a few years after the RA....

  • The chicken or the egg, that's what my rheumy says too. Deep down, I know it's all a big coincidence that 1 month stands between my failed root canal and the begining of RA. .

    I am told by my doctor that my RA will most likely calm down, not disapear after my tooth extractions. Thanks for the link.

  • Thanks for that link HH, very interesting reading. Having suffered from gum problems over the years, but not recently, I can't remember if they improved when I started Humira or when I started using an electric toothbrush. I go to my dentist every 6 months and he is brilliant, he is very interested in my RA and makes sure everything is fine with my teeth and gums, never saw the connection before reading your link. Thx again. X

  • I want to be as lucky as the girl described in this paper....Here is a link to a report done at the Amsterdam University. July 2002

    ncbi.nlm.nih.gov/pubmed/121...

  • Wow! Yes please...

  • Wow! Can you imagine being able to induce RA symptoms just by pressing on certain teeth??? That would freak me out...

  • It would freak me out too Carey. This is the only medical report that I could find that was done by the medical field.

  • Oh Sue what a mess, no wonder your so angry. As popsmith says 'we put our faith in these people' let's hope when properly treated, you get relief from your RA, unfortunately it remains to be seen. Fingers double crossed for you. Hugs G. X

  • Yes, it does remain to be seen if my RA "just goes away" just wishful thinking I guess. But my fingers are crossed too.

    My rheumy says my RA will not disapear but may calm down after tooth extraction.

  • Having read HH's link with RA and gum infections, has made me think about my own flare ups in the past. My RA is currently controlled and my gums and teeth ok. Definitely food for thought. Please keep us updated on this. Wishing you all the very best .X

  • Sorry to hear this Suzannedale.

    I've got a sneaking suspicion any long term stressor to the body might cause an inflammatory response. I was walking around bone on bone for years, in agony. After the operation to fix this I got PsA!

    Who knows eh? I don't like to think of you crying under a bridge though 🙁

  • Aw thanks Hector23. I was just so full of emotions. My oral surgeon was kind of shocked at how "bad" my dental work was.

    And I was hoping he would say, " You don't have RA, you have an infection that I can cure"

    Well the Peace Arch is very pretty, so if you need to cry, it's the best place to be. Google Peace Arch you'll see how pretty it is by the ocean.

  • 😟That sounds a tough visit. But, rest assured, I had the same before I had RA. It just hadn't been performed very well the first time! Just one of those things, in my humble opinion, you'll work your way through it - stay strong x

  • Hello there mate. So sorry you have had this thrown at you. I am a firm believer that most RA is caused by trauma in some way. Mine was physical trauma of breast cancer. But I think mental trauma can cause it too. I just hope that getting your dental work sorted does mean your RA disappears or at least lessens its misery. I do get angry with this kind of negligence though. That a dentist can cause of much life changing harm is terrifying. As a dentist hater my thoughts are with you. Xxx

  • What really makes me angry is that I kept complaining the crown & root hurt and that I was dismissed. It has always hurt and all the ear infections that I 've had...grrr

  • Really sorry to hear you are so upset Suzanne .......I would be too......it's really scary that your first RA symptoms appeared after the RC work.

    Being practical now....Is it possible to change your dentist......sounds like you have lost all confidence in the one who kept filing down your crown........if you think about it - whatever good could filing down anything do? If you were in pain around a tooth you'd had root canal work on ..........but we are conditioned to believe the professional aren't we?

    Can you ask around anyone you know who has a dentist they trust ....& get a second opinion from him/her? Or do you have a Dental Council where you are who could give you independent advice about a dentist who has experience of your situation?

    When I moved here 10 years ago I went to the dentist located in the same building as my doctor.....turned out to be a bad move......I now drive 2hrs each way back to the dentist I used for 15 years previously. He wouldn't criticise the new dentist, but did confirm I didn't need to see the hygienist every 3 months(@£60 a visit) as the dentist here said. Ten years on I still have all my own teeth & need less fillings than when I was younger.

    Now looking on the bright side.....if a new dentist could remove the paste ( I know zero about root canal work - never had to have it thank goodness ) & cleans out the area just maybe eventually your immune system may recover ...& your RA might settle.

    I remember many years ago I was " grounded" from flying because of supposed sinusitis ....which turned out to be impacted wisdom teeth....so any sinus problems you've had could be connected to the RC.

    Try not to stress too much- it's a real blow, but if your oral surgeon is right it might be the light at the end if the tunnel?

  • We are allowed to see any dentist we want, but the problem according to the oral surgeion is that no dentist would want to touch this.

    Yes, I have lost all faith in my dentist, what bothers me is that I have to go back to her today and ask for a referal back to the oral surgeon to have it removed!! Our dental system here (Canada) is different from our government medical services.. The oral surgeon says once I have the referral, he will remove it along with the other cracked root canal. He says we need to remove them both soon. Oh the stupid paperwork that insurance companies want here grr.

  • Well I guess be thankful you have a great oral surgeon who is on your Team!

    I've just had physio in my un- plastered arm !Ouch ...but now a nice glass (or two) of Red as a prize for being a brave little Soldier! I'm lying I complained loud & long!

    Hope the dentist just gets with the programme & signs the referral form for you

  • I am greatful that the oral surgeon is on my team. When I first saw that his office had an address known over here as a "snotty" area, I wasn't impressed. ( a place where Hyacintih Bucket would call home) )People who live in this area refuse to call it by it's proper city name of Surrey. lol

    Anyways, I went to my gp for a referral as I just don't want to see my dentist anymore.

  • For what it's worth I think your hunch that there is a connection probably has much validity.

    I did the same thing myself because I have a lifetime of autoimmunity and dental problems since I was little.

    By the age of 20 I had already had two lots of root canal treatment and many fillings and an abcess, despite not having been allowed sweets or sugary foods while I was growing up. At the age of nine all my hair fell out. I had butterfly rashes as a reaction to sun and stress. All this was put down to be being neurotic as the oldest of three sisters, both born profoundly deaf. My mum rarely took me to a gp and never to a dermatologist because she subconsciously felt to blame and couldn't face the possible questioning of why my eczema and alopecia were so severe. The dentist, whom I seemed to see weekly, explained to her that I appeared to have a poor immune system which may have come from infant illnesses such as chicken pox.

    So it was only decades later that I discovered that she had accidentally starved me as a newborn (breast feeding too infrequently thanks to Dr Spock!) and then, when my gran realised I was nearly dead, they bulk fed me on semolina mixed with formula milk - from only 3 weeks old!

    So it's not always genetic and I derive much peace of mind from at least knowing this infancy story (both parents dropped dead prematurely) and making sense of the problems I've grown up (now 54) with. It means that no doctor will ever get away with telling me anything was all a product of an over anxious mind. Not that they have tried but...

    My RA did finally go away because it wasn't RA, and my teeth are better now than they've ever were. But I do have a lot of other problems and they have progressed so having a systemic connective tissue disease, primary Sjogrens and possible Scleroderma, is my lot.

    And the new rheumy assures me that this will affect my mouth because gums and tiny nerves are all part of the connective tissue - not to mention the dryness of Sjogrens. So of course RA can affect the gums and teeth because of the connective tissue disease.

    I recognise the need to find the cause and try to eliminate the disease and the frustration and rage at your stupid dentist failing to identify the root canal problem, only too well.

    But whatever the trigger, at the end of the day the RA/ CTD can an often does attack the oral cavity and even the ears and sinuses/ nose - and the only thing you can is try to minimise the problem by getting a very good dentist who understands connective tissue diseases and RA and our meds. Keeping on top of root canals by protecting gums and using good topical treatments is all we can do to prevent bad bacteria from spreading from mouth to other parts. I don't think the gum disease causes RA but it may well be the result of having a connective tissue disease.

    I'm so sympathetic to what you've had to put up with - but I also know how much denial about RA and autoimmunity my journey has involved, and all the false glimmers of hope on route. So I always think it's best for me to be a realist these days. This stops me from doing stuff like paying a fortune to get all my amalgam filings replaced in the hope that it cures me. RA and connective tissue diseases are almost always for life and managing your horrible dental problems is part and parcel with managing the disease I think. X

  • Very well written Twitchy. I force myself to trust the medical field. I've had sooo many "medical accidents" or

    "medical screw ups" to list. I sometimes look back at my history with the medical profession and I don't believe it myself....so how can I expect someone on the internet too believe me? So when I find a good doctor, I'm always waiting for the "screw up". I know the vast majority of doctors are excellent, but, I just always seem to find the few bad ones.

    I grew up going to the dentist on a regular basis because my mother was very obsessed with dental hygiene. She wanted to prove to her mother, aunts, uncles, etc that the family tradition of teeth pulling was crazy. For unknown generations, all her family members would have their teeth pulled by the age of 20 to prevent arthritis.

    I grew up knowing that teeth extracting to prevent arthritis was an "old wives tale" as no one in her family had arthritis....but they didn't have teeth either.

    Anyways, I was a couple of days away from my sheduled teeth cleaning at the dentist when I came upon a post by Amy_Lee about gum disease and RA. It really got me thinking about all the "old wives tales" of my grandmother.

    I really hope that I've been misdiagnosed with RA. I am hoping that I have a slow creeping infection that mimicks RA. Only time will tell though. My rheumy thinks my RA will dampen down, not disapear though.

  • Has the possibility that your oral problems might be due to secondary Sjogren's occurred to you Sue? Indeed I often wonder this is why the myth about arthritis being linked to poor oral hygiene came from? Sjogrens is a rheumatic disease and for many includes inflammatory arthritis.

    A) in primary form Sjogrens can mimic RA to perfection - minus the joint erosion (there are other negatives that balance this positive out for some of us!) and B) it is the most common secondary connective tissue disease that goes with RA. And for some it is more active than their RA because there is no real treatment. And it can start in the mouth or eyes or both plus the vagina -so many with primary and secondary Sjogren's have severe and ongoing dental problems as well as severe eye and gynaecology issues.

    I know it's hard to just accept that we have these rubbish diseases. And your family history of tooth extraction to avoid arthritis makes the mind boggle?!!

    In fact had a weird moment with an audiologist today who tracked my persistent and distressing tinnitus down to probable inflammatory arthritis from grinding and jaw misalignment - despite anti bruxism mouth guards - which I chomp through at rate of knots. So all I have to do now is crack the night jaw clenching and I might be rid of my tinnitus. Yay!

    I bounced out of this hospital appointment clutching meditation relaxation disc and booklet but am getting down to a bit of harsh reality now. I sleep so badly that bruxism has been the least of my worries until now - and kept my teeth pretty good because I'm nose breathing where I used to be a mouth breather. Also she said that it's probably too late as damage to auditory canal would have occurred if this is the trigger.

    My friend I'm staying with just now is very sick with Sjogrens and Addison's and steroid induced osteoporosis and is currently undergoing root canal in three teeth which our dentist blames on her Sjogrens. X

  • I don't have any symptoms related to Sjogrens as my eyes and salivary glands secrete normal fluids.

    Apparently back in the 1820's the medical profession believed arthritis could be prevented by teeth extraction. In fact it was a normal practice here until the 1950's. Also people probably didn't have dental care in the 1800's or early 1900's. It has been proven not necessary since dental care became the norm. You can still find the works and studies of Dr. Price all over the holistic sites today. His strudies were important back in the early 1900's , but not important now as we have improved dental care.

    I just didn't recieve the improved dental care from my dentist....grrr

    Your friend will be OK with the root canals. I just think we all should be aware that dentists can make mistakes.

    I think of it like "Car's don't kill people....People driving cars carelessly kill people"

  • Root canal treatment is something most people have to get done at some stage I think. My friend doesn't think twice about it but this time there's a missing root involved that the dentist is struggling to locate. I had this once too and then a massive abscess formed that drove a hole right into my jaw bone and out the other side after the root canal treatment and crown restored. This was when I was about 19 . My mum told me to pull myself together and think of the poor people in the Falklands so it must have been at the start of the war. Decades later she suffered a tooth abscess herself and apologised profoundly for her lack of sympathy at the time! It's quite a common dental error I think. But not something a dentist should deny knowledge of at all!

    My friend's back is actually fractured from steroid induced osteoarthritis so she has lots of much bigger scale pain to live with for the rest of her life plus Sjogrens fatigue which is apparently, one of the main symptoms of this disease. I always assumed I was just a very lazy daisy! She spends average of 3 days in bed and can't drive anymore lest she fall asleep at the wheel.

    I think our young dentist is pretty good - she certainly likes him and she's not easy to please. Last time I had root canal was with about five years ago when I was on Methotrexate. A tooth died on me and once dead I didn't require any anaesthetic at all so felt nothing at all.

    Just a point re my version of Sjogren's. When my Schirmers and salivary flow were measured in 2015 (I was on steroids but have never had a problem with salivary flow or parotids yet) all was within. normal range despite long term dry eyes. But once off steroids six months later my ANA was positive, very high ESR and CRP, IgG, IgA - then lip biopsy showed a very high positive for foci clusters on all salivary glands removed - a very definitive positive for Sjogren's - probably very longstanding the rheumy explained.

    So all is not always as it seems with our diseases. For some Sjogren's can present very much like MS for example. Personally I still wouldn't rule it out as the historic link with RA and gum disease. X

  • I did have MS back in the early 90's. MRI and 2 lesions on my brainstem. I was one of the lucky few whose MS just went away. There were no drugs available back then for MS. I followed the advice of my neurollogit and it just went away.

  • So glad it went away for you Sue. My disease showed up in my spinal fluid but as part of a systemic process rather than a demylienating one. X

  • So you have no demylienization?

  • No - it's Sjogrens small fibre neuropathy with autonomic dysfunction. MS and Sjogren's can have very similar symptoms and be extremely hard to distinguish from each other - but each set of similar/ identical symptoms are caused by entirely different disease processes apparently - so treatments for the wrong one can be counterproductive. Fortunatelyi think I'm doing rather well on my 5th DMARD, Mycophenolate Mofetil.

    The neurologist says there is no remedy for my kind of Sjogren's at all so I'm glad it's a rheumatic disease rather than a neurological one and very much hoping she's wrong!

  • Wow, I've learnt alot from you today. Thankyou twitchy

  • Hang on in there TTt....you have had a terrible time. But I agree that all we can do is watch our own backs......& try to find practitioners who care about their patients.

    I had 18 sinus surgeries as I sprouted benign allergic tumours & until laser surgery arrived they were just guillotined off, under GA.....only to regrow! At least that problem has been solved!

  • Ugh that sounds absolutely awful and very painful to boot. Poor you!

    The audiologist did say today that ENT still probably wouldn't see me because my problems come under the heading of neurology, which I'm already under (for all the good it does) and oral health (also under) plus rheumatology.

    I pointed out, in response, that my problems may not be ear related but there is a nose and throat dimension - but she can't refer me for these apparently - only ears. Round and round it goes so that I'm starting to feel ENT has a protecting/ repelling aura they use to bounce people like me back out into the universe with. She said I'd need to be "spinny" to be referred to ENT rather than merely falling or off kilter?! What a world we with autoimmunity get embroiled in?!

  • If you are in UK can't you go back to GP complaining

    Of vertigo...that's spinning & should get you back to ENT!

    Over here an audiologist isn't usually a doctor....so would only be able to refer re ears...but common sense should have her refer you back to your GP to refer to ENT specialising more in nose/throat

    After my recent fall I thought the bang to,my head had brought on Tinnitus...I thought I could hear singing when lay down at night ( I've only had one glass of wine honest!) but when I spoke to my friend an ENT surgeon...thinking I'd be on the way to psychiatry....she said to listen properly...it's only sound waves that sound musical & she was right.....and as the bruising on my head fades I hear it less often!

    Whew..one less thing to worry about! I must stop falling over!

  • You thought you could hear singing when you layed down AC? You must of banged your head really bad. I'm glad you are healing.

    I love wine too and I was glad I was allowed to have a glass once in awhile on mtx. My liver seems to be the only healthy part of me lately...

  • Me too...never had any probs with my liver...just my Head!

  • She says it's not "spinny spinning" - it's falling spinning or diseqillbrium - found with proprioception issues associated with irreversible neuropathic damage, rather than vestibular issues. She lay me on my back with head dropped back leaning one side at a time in her hands to test this. No spinning means not vestibular in origin apparently.

    She's only saying the same as my neuro says but I'm a person who likes hard evidence rather than things presumed if you know what I mean? My evidenced based nature doesn't suit rheumatology or neurology all that well really!

    I do wish mine was just sound waves that faded as I got over something like a fall. Mine is like a very high frequency alarm that never dims for a second blast it! But the swaying and disequillibrium are apparently not necessarily connected with my tinnitus - unless all part of neuropathy which is also quite possible I'm told. As with all things we are discussing here - I may never know.

    But I think bruxism is quite a likely candidate so will give her plan to introduce hearing aids with white noise a go.

  • That lying down test turning your head from side to side is used here to test for vertigo. The first time I had it was in a room with small square window panes & as my head turned all the squares wobbled like mad. I went on to have something called the Epley Manoeuvre, where you lie back, move your head from one side to the other (in a controlled way) then you sit up...but with your head still looking down. This re-arranges the debris in your neural canals that cause the dizziness. It works well for me..my physio taught me how to do it at home. So I can fix my own dizzy spells....it's magic!!!

  • That's great news that you can fix your own dizzy spells.

    I'm going to try your excersizes.

  • I sent a reply to you about trying the exercises ,but it seems to have disappeared .

    Please don't try them until you have been properly diagnosed by a qualified person....you could make things ten times Worse!

    Hope this reply doesn't disappear...it's 8am here....soi'dbetter get up now,actually slept well after my physio treatment !

  • Interesting You've found yourself a way to conquer AC -that's great!

    The audiologist did sit me back up after each sideways test and asked me how I felt - and of course then I did feel rather dizzy - but that's a BP thing she said.

    I struggle a bit with this idea because PoTS would have this effect from orthostatic hypertension. So where do vestibular and vascular and neurological separate? I suspect mine is vascular - it isn't in my large nerve fibres for sure. But now I learn it isn't in my ears either?

    In the distant past I've had Benign Positional Vertigo (during first pregnancy but thankfully mine is nothing like this now. However if I move head to the side, look back, look up - all from standing/ walking - I feel as if I'm falling off a cliff. I sometimes feel this when paving stones are deceptive or I can't tell where I'm walking so I just have to stop in my tracks and reassemble/ information gather about exactly what is around me and in front of me. Must look doolally to any observers!

    But hopefully the audiologist is right to say that this illustrates the difference between vestibular and neurological/ proprioceptive? It's not something any one has given me exercises for yet but I plan to ask about neuro physiotherapy because I believe there are eye/ brain exercises and I would dearly like to try but need someone who knows what they are doing to teach.

    At the moment it's all cuts cuts cuts for the NHS so they won't refer me for testing for autonomic dysfunction as I believe they really should.

  • See my post to Suzanne. Ask in your local hospital if they have a physio who has studied the Epley Manoeuvre & the ask for a referral. As you say NHS cuts are biting hard, but if there is a physio who uses this manoeuvre you should be able to get an appointment if your doctor thinks you are a suitable candidate. You may need to search out a Private Physio.

    I have BPV & trained person can tell from your eyes & how dizzy you feel on each side if the EM will help you.

    Good Luck...hope you get help soon.

  • Thanks but as I say it's looking like my issues aren't vestibular at all apart from possible arthritis in my jaw as cause of tinnitus.

    So I would need my neurologist to send me to a specialist neuro or cardio physio I think. And, as with yesterday's tinnitus counselling, I'd want to make absolutely sure that they knew the cause/ origins of the disequilibrium first. I've been misdiagnosed and treated a few too many tines now to take the suck it and see approach ever again!

  • Oh you poor soul! No wonder you cried. Having toothache for all that time and, to pile on the agony, starting RA. Did your oral surgeon say when he is going to remove your root canals? Huge gentle hugs x

  • Hello Buttonhater. I am on antibiotics now and I have an appointment on Feb 8th to have them removed. In Canada, I need another referral from my dentist to have the 2nd root canal pulled. He has all the info on the "problem" tooth, he just needs the referral to do the paperwork and the removal.

    Is it like this in the UK? I mean, I was referred to see him about my lower cracked root canal molar. Once he saw the xray, all his attention was on another root canal on the top of my mouth. Apparently this is the root canal that is causing problems.

  • Totally different here I suspect. Ordinary dental work can be done by any qualified dental surgeon. Complicated surgery, especially if general anaesthetic is used, has to be performed in hospital following referral by your Dentist. I reckon you've been treated by a butcher and could have a claim against them - I hope. I loathed my previous Dentist and changed to another when he didn't Spot that one of my molars had broken. I hope the antibiotics help and you don't flare as a result. Huge hugs Jan

  • Here being where? Where it is totally different?

  • In Canada, you have to prove the medical profession maliciously intended to harm you inorder to sue them. I know she did not intend to cause me harm.

    As angry as I am, I do believe in following the law, so I will be filing a report with the Royal College of dental & Surgeons of BC. I shall let them do the disciplinary action.

  • I was asking buttonhater, re her post about ordinary dental work etc. Which isn't actually correct if she is in the U.K. 😉

  • Happy to be corrected

  • Lol. Sorry. Did I come across as a bit harsh. 😏. Depends what you mean by 'ordinary work'. An you can have anaesthetic in a GP surgery as long as a qualified anaesthetist is administering it. 😉

  • So you can't sue for total incompetence leading to personal suffering and expense? Oh my!

  • I would have thought there would be the equivalent of the general dental council fitness to practice board to report them to?

  • You'd have thought so wouldn't You?

  • The Royal College of Dentist of BC should be the equivalent of your General dental coucil fitness board.

  • Ah ha. Sorry. Shouldhave read your previous post better Suzanne. 😏

  • Well we are all getting older eh dtech? lol

  • Yes, you can not sue a doctor for incompetence. You must prove malicious intent to cause harm....but I could sue if she performed a root canal without the proper education or training degree. I shall look into that. Thanks for the info Buttonhater.

  • Happy to help

  • I never thought that she might not have the credentials to perform root canals. That would make sense to why she didn't know why I felt a lot of sinus pressure after it was done. I'm going to have to look her up.

  • Ah Sweet Sue - I am so sorry - Sorry for the pain you are having, the pain you probably will have, and the work it will take to put in bone grafts, metal posts and replacement teeth if you go that way. and mostly I am so sorry for the anger and feeling of betrayal you are going through. Like you, I don't really know if the infected teeth caused the RA (or in my case exacerbated it greatly), but there are some bright spots in there:

    - You will feel better after they are out, and pretty quickly. When I realized my molar no longer hurt even after some pretty serious digging I was so excited, but I started feeling just generally better within a day or two of toxins not dropping into my system

    - You will probably breathe better - I didn't even know mine was messing with my sinuses until my hubby mentioned several times that I am breathing better at night so I am also sleeping deeper, and consequently so is he.

    - You will be able to eat more comfortably after everything heals

    - Maybe, just maybe, your RA will start to go into remission a little sooner than it would have. I still have pain and experience fatigue, but I found myself last week actually cleaning the garage, prepping for a class I am going to be teaching, etc.,

    - Your motivation might be better then when you are subconsciously in pain.

    If you would like to talk real time PM me and I will be happy to send you my number, although I am in the states, so not sure of the expense..

    Again, I am sorry for this, but I think you will so much better once it is done... When are you scheduled to have this done?

  • If you both have iPhone or iPads you can call each other free 😊. My wife and I do that if we are away abroad.

  • I mean abroad apart that is. We do talk in the normal way if we are abroad together 😉

  • Gosh.... There's posh for you......husband & wife actually phoning each other!

  • I only ring her to tell her where I am, or she wouldn't notice I wasn't at home until the bins needed putting out 😂😉

  • Yeah....a very perspective answer dtech...that was the only reason I missed my ex. Holding open those slippery black bags really needs 4 hands!☎️☎️☎️

  • Oh you two are funny dtech and AgedCrone. I miss my hubby when I need to open up a jar!! lol

  • Oops - I'm a Samsung type... =(

  • If we have any probs in common ...I can chat with you Caeryl....I get free calls to US up to one hour on my BB package.

    AC

  • I have a HTC phone. :(

  • I need an iphone or ipad. I have a top of the line HP laptop with all the bells and whistles...of 2005 lol...my laptop has a nice shade of gray duct tape holding it together...lol...I need a new computer.

  • I've got an iPad but I can't make phone calls on it..but with free calls on my landline I'll hang on to it...for email & QVC!

    Just seen Apple have upped the price of their new iPhone over here by 25%.

    So I won't be getting that either! $750 for a cell phone. I don't think so! That would buy a teturn flight to NY!

  • I'm scheduled for the extraction on Feb 8 and I hope to have the other one done at the same time. Lots of pain, but hopefully lots of gain. So your husband noticed you are breathing better? Wow, my husband said I started snoring a few years ago, he can't remember if it was after the root canal though.

    You are very sweet to offer me your number. I would love to talk real time once this jaw swelling is gone. I believe you are in the same timezone as Ottawa Ontario, so about 3hrs ahead of me. Phoning Ontario isn't that expensive, but I'm not sure of the States....but I'd like to find out :)

    I am so happy that you have noticed an improvement in your RA since your extraction. I will keep you informed on mine :) How odd that you and I have this in common.

  • Actually I never snored either until the tooth issue. Then Tim said I started snoring which really surprised him after all of these years - ha ha. Wow - That seems so far away, but I had the same issue - it took them 6 weeks to work me in... Fingers crossed...

  • The infected tooth may not be causing the sinusitis though. I saw a dentist who said the converse ie that a sinus infection was affecting my teeth.

    The ENT dept of the hospital (which I attend for the RA) did a CT scan and confirmed an infection in a front tooth in which I had a root canal done 2/3 years ago. I had stabbing pain in it almost immediately which wasn't much but got worse. I had the tooth filled but no crown.

    There was also a back tooth showing an infection, where over about 3 years an abscess comes and goes, which also had a root canal and which has had three crowns in a few years because they were not done properly.

    As you will appreciate, an abscess is caused by bacteria. It has transpired, as confirmed by the hospital, that the sinus infection I have been suffering from for many years now is actually a cold virus. It is very unpleasant and causes cold-like symptoms - coughing up and violently sneezing up phleghm, breathing difficulties and feeling unwell in varying degrees.

    I would recommend that you see an ENT specialist and see if you can get the type of infection identified. It must be very bad if it showed on an x-ray - the infection in my front tooth did not show up on x-ray, only on a CT scan. (Only bacteria would show, not a virus as they mutate and hide.)

    I did try an Indian herb, Ashwagandha, which is supposed to boost the immune system. After a month, the sinus/cold infection was about 90% reduced but the RA really really flared up so I had to stop it. I might give it another try though.

    You can try antibiotics for the tooth infection. I have recently been taking two together for a stomach bug (h-pylori) and there has been no pain in my front tooth at all albeit I suspect this is only a temporary respite. The sinus infection though was really bad while taking the antibiotics, thus proving I think that the sinus infection is indeed viral.

    By the way, I went to Bratislava in August to visit a dental clinic recommended by a friend. They also did a CT scan and confirmed an infection in both teeth but they did not think the tooth infection was causing a sinus infection. They are much cheaper than the UK, eg a dental implant costs about £1,000 as opposed to £2,500 in the UK. The same friend also goes to Goa for dental work which is cheaper still. It is not just the price though - they are better dentists, have advanced equipment, and do not hurt, and they are honest.

  • Thanks for the advice on the indian herb, Ashwagandha. I will look into this as I live next to the largest Indo Canadian Community. You can walk down the street and you would think you where walking down a street in New Delhi.

    The problem I am having is that one of my root canals have either penetrated my sinus or is pressing up on my sinus and it is causing a lot of problems. My oral surgeon said that because it was not done properly, my sinuses are not draining properly.. This backed up sinus is a breeding ground for bacteria.

    It's scary to think a dentist who does not have the credentials would perfom this proceedure. My dentist has performed 3 root canals over the years. The 1st one has cracked, the 2nd one is effecting my sinuses and the 3rd one has a 3cm lump above my gum line. When I asked my dentist what the lump was, she said "That's just excess stuff" that we used to fill your root canal. "

    I have since learned that "excess stuff" should never spill out of a root canal and form a 3 cm lump under the gum. I am at a loss for words.

    '

  • I would agree that this is medical negligence. One mistake with a root canal - ok they are just human - but three?? This person shouldn't be allowed to perform root canal on anyone ever again! What does the ENT person say about this I wonder?

    What I've failed to mention here is that I too have pain and a feeling of pressure all the time for over two years, somewhere between my upper front teeth and my nose. This is what I feel I need to get checked out and why your post felt so relevant to me re sinus/ root canal pain .

    My dentist did find a couple of slightly inflamed roots when I made him x-ray the front of my mouth, but he said they certainly wouldn't cause this kind of ongoing problem. But maybe they could? Not sure if this is for ENY or oral surgeon as I've never yet managed to see an ENT🙄 They keep flicking referrals back to neurology, GP and audiology without seeing themselves.

  • Twitchy your dentist is lying to you. A root canal can and does effect your sinuses, if done by a dentist that is not an endodontist. I learned this the hard way. Please get a referral to an endotontist.

  • I don't think he meant that they couldn't but rather, that in my case, from what the x-ray was telling him, the weren't the source of the crushing sensation, burning gums and lips and tight feeling in upper teeth and gums. The roots he could see weren't sufficiently inflamed to cause any problems yet. But this was a year ago and I've had it constantly for two years now so guessing it's neuropathic - but would like a CT done of my sinuses to make sure. I suspect I might have a deviated septum as always had some weird loose thing going on when I blow my nose and lots of nose bleeds. Got to sort out possible vascular /cardiac problems out first but if it became more painful I'd see an emergency dentist. I'm moving about between locations just now so it's complicated. I hope your dentist pulls out all the sips to resolve your problems now.

  • My dental x rays didn't show it either. The oral surgeon had a 3 D xray machine that showed more areas around the mouth and sinuses.

    I found a link on overfill of gutta percha (the stuff used to fill a root canal) it is known to to sometimes cause neurological diseases. I hope this isn't your issues, but I would like you to read it.

    ncbi.nlm.nih.gov/pmc/articl...

  • Gosh this is quite an eye opener for me - thanks Sue!

    I do have an oral consultant who organised my lip biopsy. It's difficult because I have so many body wide issues - many of which are still unexplained- I find it hard to focus on any one thing properly? I have asked so may times about this weird facial issue and was admitted to hospital with it for a week under observation when they thought it was vasculitis. Then was told by three oral consultantsand a Maxilofacialsurgeon that it was an ENT issue. I seem to be destined to be passed from pillar to post! I will defintely ask my dentist to refer me back to the oral consultant for proper imaging next month - thanks very much x

  • You are very welcome. Knowledge is power. I just have a feeling of being passed around to. I am going to get my referral now as the oral surgeon in now stepping in to make sure I get looked after properly. I am aware that this might have nothing to do with my RA, but it is never a good thing to have gutta percha sticking into my sinuses or sticking out the side of my mouth.

    Stay strong Twitchy, don't allow them to continue passing you over. They are hiding thier medical mistake, not yours.

  • Well I admit that I am quite persistent too and have got myself onto quite an expensive and effective DMARD now by really reading up and researching on Lupus UK plus Scleroderma HU for most well tolerated and effective immunesuppressant. And the opthamologist told me today that it seems to have helped my eyes already after only 7 weeks so I'm feeling rather chuffed for once! So I can assure you that I will use the info you have given me wisely - HU is a huge bonus for the proactive as well as providing supportive communities. I'd never have discovered Mycophenolate otherwise, best of luck to you x

  • Root canals are difficult. I have had very good and bad dentists. Thirty years ago I had what was otherwise a good dentist. He had four attempts at one root canal. I then went to a dentist in Harley St on the recommendation of a colleague, and he did the same job effortlessly - and did not charge me as he said he could not imagine what I had gone through. Unfortunately, I did not stay with him as I thought I could not afford it but have paid out a fortune on poor and unnecessary dentistry ever since, losing a few teeth unnecessarily. He was Australian.

    Dentists don't seem to do scans either. I had pain immediately following the root canal three years ago and the dentist who did it ignored the pain I was getting in the tooth afterwards. I then saw three different dentists and they all said there was nothing wrong. They all did an x-ray at £60 each and found nothing and would not do a scan but a CT scan only costs £200. Then the hospital did a CT scan and found the infection. Nobody offered me an antibiotic.

    I did not find this in Bratislava. They did a scan immediately. They also cleaned my teeth using air flow and they looked lovely, much whiter. After six months, they only just need cleaning again with a minimal build up of tartar. Yet, for decades here I have had to have my teeth cleaned every three months, and a month later there was a heavy build up of tartar.

    There is no dentistry regulation over here.

    I would still try to see an ENT specialist if I were you. As regards the situation precipitating RA, I would not be surprised. I think that bugs are implicated. I've thought it in my case regarding the sinus infection but I have also thought it with regard to my reactions to a heavy usage of antibiotics.

    Re. the Ashwagandha, be careful with this as it seemed to stop both the DMARDS and the Chinese herbal tablets I was using from working. Both only started to work once I had stopped the Ashwagandha. I could not even get a bra on for a few days yet now my shoulder is 100%. I am going to try it again though - I am never certain until I have tried something two or three times and I will let you know what happens. You don't want a flare up of RA on top of everything else.

    Best wishes

  • Yummm - My two favorite cuisines - Indian and Ethiopian...

    "Excess stuff"????? Is that like the by products in pet food?? Yikes...

  • Good point - I hadn't thought of it in the reverse...

  • pesonaly i think their is a real connection ive seen so much on this regards receeding gums

    And what havens is your mouth is a breeding ground for bacteria and the like both good and bad if you have loose gums pockets the bacteria can get in go into the blood stream through the root canal blood flow into your system. their is evidence to say people who have knee ops they find bactera from the mouth in the knee on examination.

  • It is begining to look like my dentist should never been allowed to preform root canals.

    My root canal on tooth #26 was redone by an endodontist. He discovered that my dentist missed a turn in the root and bacteria was breeding. When my endodontist fixed this root canal, the swelling in my knee went down instantly.

    Root canal on tooth #37 was extracted and instantaneously my RA symptoms decreased by 50% .

    I still have RA symptoms, but I discovered that a root canal was done on tooth #36 without my knowledge or without the approval of my dental insurance. There is NO record of this root canal anywhere......but, I do remember jumping out of the dental chair screaming in pain when she was supposed to do tooth #37,..so I guess she started a root canal on the wrong tooth.....

    I asked my endodontist if he could redo this root canal without a referral. He has agreed to do it. He has written a scathing letter to my dentist. Off to a malpractice lawyer in March.

  • HM LOOKS LIKE THEY MADE A BAD JOB OF IT

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