My dental problems also started long before my diagnosis. It reached such a severe point I ended up in hospital with dental sepsis on intravenous antibiotics and that was the beginning of a long and torrid journey. The dental infection came at what we now realise was a particularly bad episode of the SS. I developed massive lymphadenopathy, so severe I didn't have a neck (the nodes and salivary glands were large chicken egg size, rock hard and hot. When they did CT, MRI and x-rays and they stopped counting my swollen lymph nodes in my chest at 30, only to find that the ones in my upper abdomen around my liver were huge also. I was so weak and feverish I actually wanted to die. Then when the Trigeminal Neuropathy started and I woke up in hospital on day two, all the blood vessels in my eyes had ruptured and I looked horrific. The pain in my face, behind my eyes and the perpetual headache was compounded by the air conditioning and I coudn't get enough pain relief (I am intollerant to morphine and codeine and have GIT bleeds with Non-steroidal anti-inflammatories, and because of the infection, they couldn't and wouldn't put me on cortisone).
So after fine needle aspirates of some of my throat nodes, they told me I had Lymphoma. I started preparing myself mentally for what lay ahead. Then the serology came back, all the teams were mystified, what we now believe happened is that somehow (probably in the course of my job in a pathology lab) I contracted a disease called Q-fever. Nasty little critter usually only caught by abbatoir workers in this country - and of course I am severely allergic to Doxycyline, which is the only known antibiotic to kill it. The Q-fever is know to cause autoimmune and abnormal immune responses as it's a tricky little devil that can hide in cells for many years sometimes. So more batteries of tests, including full lymph node excissional biopsies - which showed the disease was mimicking lymphoma. Lucky me.
Then other neurological symtoms started appearing, the worst is the tremoring, some days so severe I can't hold a cup of tea or brush my hair properly, muslce spasms and twitching that look like severe Parkinsons (no it isn't, nor is it MS). with weakness that on my worst days means I have trouble standing or getting out of bed, numbness in hands and feet or worse, pins and needles or burning sensations followed by exagerated sensations and severe muscle pain, incontinence and digestive upsets. It cycles - I can be like that for 10 to 14 days and wake up one morning feeling almost normal other than the terrible terrible fatigue, dry eyes, mouth and the trigeminal neuropathy.
I finally got treated for the Q-fever about 6 months after being released from hospital, it took a lot of hard work on the part of the ID & immunology guys to get Doxycycline desensitisation treatment from the USA for me, and I spent a few days in intensive care having it injected IV every 20 minutes in cycles until I stopped reacting to it. Followed by a four month course of oral meds. (Still no Prednisolone)
The cycles have been like that for over two and half years, but becoming more frequent and longer in duration. Being bounced from doctor to doctor (and running out of money to pay for it all), with no-one able to pinpoint the problem. It took a broadly educated, smart, infectious diseases specialist to work it out.
So it appears I have Systemic Sjogrens with CNS involvement, I have another CSF review to go through and they are also trying to work out if it has gone into grey matter in the brain, but in truth it doesn't matter right now. They finally put me on immunosuppressants and most of my worst neurological symptoms have significantly reduced or gone for now, which is a relief at this stage.
Currenty I am at the mercy of our national health care system, as I no longer have any insurance and although I will be seen, it won't be timely as the waiting lists are between 4 and 8 months long (that's for one appointment). I should be thankful I suppose, at least I'm not completely out in the cold without any care. But unfortunately our subsidised dental care for problems related to chronic health issues was scrapped in December because of the global financial problem, until then all my dentist visits had been paid for by Medicare. So now it is unafordable to pay out of your own pocket for visits unless you take out a short term loan or go on a repayment plan some of the dental practices have started up. My TMJ on one side is now terribly painful all the time and keeps dislocating. It's the side of my face that is worse and apparently I grind my teeth in my sleep which isn't helping. The dentist wouldnt fit me for a dental splint because he says that the joint and teeth that side are so unstable it's likely to make things worse.
I'm prattling, sorry - I don't have anyone to talk to about this, my family unfortunately are a long way from me, not very smart, caring or understanding, and definitely not supportive. I am remaining optimistic in spite of how much an uphill battle it has been (including my GP who for a long time told me my symptoms were in my head until he got copies of my results), he was happy to prescribe antidepressants and sedatives and refer me to a counsellor though.
Now, he says my case is too complicated for him. I'm in a small country town with few medical services of note, so changing doctor isn't an option right now, better the one you know than the one you don't - right?
The specialists are in another city about three hours drive away, so it's not like I can just drop in on them at short notice if there is a problem or they want to review me. The tyrany of distance here strikes again.
I think I've unloaded most of my main frustrations - sorry for the long winded post.
I guess that's why I'm here, a little understanding and support.