Okay, I know I might be 'jumping the gun' here but went for a follow up with GP today and my dentist - and GP agrees I need to be tested for Sjorgens. So he is arranging bloods on Thursday. And will refer for lip and saliva gland biopsy even if bloods come back negative because he said the results of bloods may be negative but you can still have it. But it's progress.. !
So if I do have it I know I'm not going mad. If I don't have it - I'm going mad..
Just pleased someone is listening. Maybe the advice is go to a dentist if you think you have Sjorgens?! Not a GP..
Anyway, will wait and see.
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trueman
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OK❗️👏. Good going & good advice....very interesting....come to think of it, my dentist was the first of all my medics to help me inch my way towards finally getting my multisystem autoimmune conditions diagnosed...wishing you all the best with this...hope you'll let us know what happens next...
Do you also have SLE? I have all of them - Sjogrens, Scleroderma, etc. They all go along with SLE. I did read that 90% of patients diagnosed with SLE also have Raynaud's - myself included. Can't figure out which is the worst one. They're all not good. I use eye drops and before bed, my pharmacist recommended Nivea lip Creme.
Even if it is not Sjorgens you are not going mad! I thought the same 15 years ago.
I think when something tips our bodies over the top whatever it is, we can have all sorts of immune system problems and in today's world that is not difficult when our bodies are subjected to so many outside stresses.
Let's face it the conventional system of medicine just isn't that good at diagnosing and curing such problems that is why I choose the complementary route to help my body deal with the stresses and have more chance of curing and healing.
Talking of dentistry - I know I made loads of mistakes not least having root canal fillings and crowns with metal pins, my body just doesn't like them and root canal fillings can cause all sorts of health problems due to bacterial build-up in them.
I have seen lots of warnings lately about them.
Many of the treatments that I have been told were OK for the body have just messed my body up completely and now I have to be very careful who I believe and what I take or put on my body because everything goes in through the skin, too, of course and just increases the toxicity for my body to deal with and hopefully excrete, but when the detoxification system is overloaded that is when we get all the horrible symptoms and fatigue.
Interesting subject...I can v much relate to this...at 6, despite infant onset SLE + early onset sjogren, i've only had 4 awkward teeth: my 4 main opposing molars. all have had a lot of work (earlier fillings, later root canal).
Infection was allowed to develop & establish & persist deep under one filling due to a lazy NHS dentist...despite root canal by a better dentist, the infection remained for 20 years and worked its way into my upper jawbone where it turned into osteomyelitis...the better dentist finally advised extraction & implant...at about the same time my multisystem conditions & symptoms were debilitating enough to mean a top lupus experienced rheumatologist was discovering my lupus...so the oral surgeon had no firm warning until the implant was in place & my infancy diagnosis recovered. The result: in my first year on specifically prescribed daily systemic lupus meds, I also spent 5 months on high dose daily oral antibiotics for osteomyelitis & the related sinusitis that broke out on that side of my face.
Then, 4 years on, rheumatology realised I also have an early immunodeficiency running alongside my SLE. Sometimes I feel as if I live "between the devil & the deep blue sea"...everything is about risk/benefit ratio....had I not had the dentistry treatment that kept those molars in my mouth, the dental appliances I could've had to wear would've troubled my highly reactive sjogrens-affected soft oral tissues....but the deep infection might not have occurred....and continued to haunt me now (ENT & my dentists say the osteomyelitis is probably still in there simmering away...my chronic sinusitis inter-playing with it & resulting in worse symptoms on the side of that bad infection)
Hmmm....
On the HU vasculitis forum, there is a great person who practiced dentistry and has fascinating views on all this subject...
I have been having all my roots removed or root canals and crowns, just 3 to go, but they are at the front now, but health much improved since 3 out in March, April and May.
My dentist wants to get on with the front crowns, but I will go with my body as the others fell out or should I say my body kicked them out!
I will wait for my body and not what the dentist wants to do, although I know they will come out.
I also know it means dentures as I can't have implants with my health problems and the warnings of only having implants if in good health, so that rules me out.
A bio-energetic tester found a genetic myasm in my system and I want to get this sorted with homeopathy if I can.
My parents had dental problems, too, so it is like a maze and like you, I feel as if I am between the devil and the deep blue sea, but I trust my body and I want to do what will help me to keep my energy and keep reasonably well.
Let's face it a lot of what is done to us in the name of health is dangerous and who suffers the come-back - not the dentist, not the doctors, but us!
This is why I take responsibility for my own health now and wish I'd had teeth out years ago instead of crowns and root fillings, etc., but no use having regrets just take each day as it comes and do what feels right at the time.
You've been through a lot & are going through a lot. I think these experiences cumulatively afford us access to a highly individualised sort of innate body-con wisdom. Nothing & no one is perfect/foolproof/infallible (another thing age hammers into us), but some advisers, inc some Drs, prove more trustworthy than others...and, at this mo in time, my bod is that sort of adviser....as are a few Drs I've found I can most often count on.
But, whatever, once "we've" decided on a particular "route", I'm still madly monitoring...my life is always a case of "suck it & see"
I use muscle testing taught to me by a kinesiologist when I was seriously ill. Some use dowsing and that works for them. I wouldn't be without the muscle testing facility!
i use it for all drugs and I am sure I would now be dead if I didn't.
I haven't been on for a bit because I've been in so much pain. Thanks for all the input above. I'm going to read all the posts and will be back. Have a little update with regards to what's maybe been going on.. nerve damage. Possibly trigmeula nerve.. Don't think I spelled that right! Anyway going to read posts and feedback. Sorry I've missed your posts for a week..
Take care: that can be vvvvv painful...but I do know someone who managed to get her version of trigeminal nerve pain under control relatively promptly...wishing you all the best🍀
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Difficulty swallowing 
Finally Home in my comfort zone 
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Hi - New and Undiagnosed
Skin & blood results
