Hi, this is (quite) a long story, so bail now if you don't have good stamina! I'll try to keep it as short and focussed as possible. (By the way, I am in the UK - sorry for gate-crashing you, but I couldn't find a UK forum.)
I have Trigeminal Neuralgia, a neurological condition causing severe electric shock pain in the face. I fought for, and got, B12 injections to see if they would help and - miracle - they sent the disease into remission. This all started just over a year ago. I have been trying this entire time to find a reason for the disease so that I can stop it getting worse (it is incurable and degenerative). I have long felt that this is an autoimmune problem, although TN is not cited as an autoimmune disease. That said, no-one knows the first thing about TN; it is a rare condition and subsequently never researched.
Some months ago I told my doctor I thought I may have Sjogren's Syndrome, as I suffer from very dry mouth and eyes. The mouth has been worse in the past - being so dry the inside of it became 'corrugated' - but the eyes have been better. Currently they are very dry and itchy; so itchy I tend to make the skin around them red and sore rubbing them; although I try not to do that. It seems to go up and down like this. Unfortunately, I am on Carbamazepine, and this could be a drug-related problem. On the other hand, my doc is guilty of just assuming things are drug-related when they might not be. I had swallowing difficulties earlier in the disease and my neurologist also just assumed they were drug-related. They persisted a long time but have got better since I reduced drug doses, but I do still have problems (throat just seems to stop working, and can't swallow, but I am no longer choking so often.)
Additionally, I have EXCEEDINGLY dry skin, all over. It is scaly, tight and fairly untouched by creams. Just recently I have developed small scaly patches of thickened skin above my elbows and hips, but I have also had them randomly on my knuckles and other locations. My genital area is so dry it itches and gets raw and chafed all the time. I also have an almost constantly irritated urethra which recently developed a UTI. This landed me in hospital with low blood sodium, but I had to take antibiotics for it, which I have NEVER had to do in my whole life. This means, as far as I am concerned, that infections are taking hold far easier because of dry irritated skin without a protective barrier.
Additionally, I have quite bad ankle and foot pain, and achy muscles at the slightest effort, but I have had these so long I am not sure whether they are relevant. I am not arthritic otherwise.
Additional things that may be relevant: I have Neutropenia (low Neutrophil count), low blood sodium and unspecified anaemia (low Haematocrit). I have also had a rash for 8 months to a year that is getting progressively worse and now covers the best part of both legs, one arm and my breast. This may be Pityriasis Rosea, but my doc is not interested in it, so I am not sure. As far as I am concerned it is yet another sign of autoimmune, or skin infection from a broken barrier.
I now have a zillion other tedious symptoms, like subclinical hypothyroidism, which I don't want to detail here. What I want to ask is given these broad strokes, should I pursue Sjogren's testing? I only found out yesterday, quite by a bizarre accident, that Sjogren's and Trigeminal Neuralgia have a close relationship. I had no idea of this, and it was never mentioned by my doc, who believes my TN is just fate and I should suck it up and stop looking for a reason. He is not supportive of the autoimmune theory and will not look favourably on Sjogren's testing, I suspect. I have only limited energy and have to fight him on nearly everything so I don't want to go to him with this unless this is a viable diagnosis.
So, in the expert opinion of sufferers here, do I sound like I have the markers for the condition, or are any of my other conditions, such as Neutropenia, relevant? I should also just mention I have partial IgA deficiency. I don't know if that's remotely relevant, but I'm throwing it in!
Thanks for wading through this. I appreciate any advice, or even just thoughts on possibilities....
P.S. Should just add I have been tested several times for Coeliac disease, but no luck, although I personally feel I have gluten issues of some sort. I have no idea why, just an irrational conviction!