Should I fight to have this taken seriously?

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!

19 Replies

  • Hi Chancery I'm sorry you are going through such a miserable time, it's very wearing and soul destroying. While I'm no expert except for having many autoimmune conditions for 20 years now, I really feel you should demand your GP to run a full Autoimmune blood screening on you. I also think you should be referred to a dermatologist about your rash, a good GP will admit that they know a little about everything and not a lot about anything and should always be willing to refer you to the expert when required. Best of luck 😀

  • Thank you, Bronagh. I have a horrible feeling the NHS doesn't do autoimmune screening here. I'm pretty sure I've seen that in a discussion on how hard it is to get an immunologist appointment. It was ever thus! I think maybe a rheumatologist might be my next best bet.

    But yes, you are right about the dermatologist. I couldn't face seeing another ologist, but I think I need to admit something is afoot here. It would at least be helpful if they could biopsy the rash and tell me what the damn thing is!

  • I'm from the UK Chancery, Northern Ireland, and Autoimmune screening is easily done by a simple blood test in your GP's surgery on the NHS, that is actually how I was diagnosed.

  • Really? That's great news - many thanks for telling me. What do I ask for? I mean is it a specific test, or what? I've never heard it mentioned on the thyroid forum, where quite a lot of people have autoimmune issues. Any info you could give me on what to ask for and what exactly it screens for would be most welcome - or a link, if the NHS has one or something?

    I have to confess I'm annoyed though. Right form the outset - more than a year ago - I've been telling my doc I thought I had autoimmune issues - why the hell have I never been tested for it if a test's freely available? Now I'm worried Scottish NHS doesn't do it!

  • It would be a screening for antinuclear antibodies, raised immunoglobulins and inflammatory markers and would highlight if you tested positive for many different autoimmune diseases e.g. SLE, rheumatoid arthritis, Sjögren's, scleroderma etc. your GP or practice nurse should be able to tell you more about it and I can't see why it wouldn't be easily available in Scotland. Good luck and stand your ground with your Dr, be polite but firm.

  • Thanks, Bronagh. I've printed out all the ANA info from Lab Tests Online, and I am going to take that with me and ask to be tested for, at least, Sjogrens and Lupus. I see that there is quite a bit of crossover in the testing, so hopefully that will work. I was also pleased to see that they use ANA testing for 'drug induced lupus' too, so that's a big help.

    Thanks for all your help - I really appreciate it!

  • Sounds very much like Sjogrens. Try and get a new doc, you should not have to fight him as well as the illnesses

  • I'd love to, Willy, but he gives me monthly B12 injections when I don't really merit them (as far as the NHS is concerned). As they are keeping the pain of trigeminal neuralgia at bay, I really don't want to jeopardise them. But I couldn't agree more about the fighting thing. I dread it; it gets very old very fast and makes being ill (and trying to get better) much more arduous than it needs to be.

  • Yes! fight like blazes! I think it's harder with your NHS to get some things done -but please get ANA screen done-even if it rules out a definitive diagnosis. I have UCTD -which I thought was a cop out diagnosis :( and APS but after reading a bit further it does fit with me. It takes a bit of tenacity but worth it to get the right treatment. Don't continue to be miserable.

  • Hi Ozchchick. ANA screen? Is that the autoimmune screening that Bronagh mentions up above? I have seen that mentioned while reading about Sjogrens but assumed it was a hospital-consultant type of test. That'll be great if my doc can do it. (I can see his smiling happiness at being asked right now!)

    I'm sorry, I don't know what UCTD or APS is. So many diseases, so many initials! Please tell me and relieve me of my ignorance...

  • Sorry! Undifferentiated Connected Tissue Disease- in my case I'm always + for autoimmune but not a specific one (if that makes sense) but generally my worst symptoms lean toward Sjogrens-dry mouth, eyes. Anti Phospholipid Syndrome which is essentially "Sticky blood" or Hughes syndrome. Means I have to be anti-coagulated always otherwise (even on meds) I'll get clots in lungs, legs and brain (not a good one!)

    The blood test you want is ANA or Anti Nuclear Antibodies and possibly ENA which rules out (or in) some diseases and DsDNA. these can be done all in the one collection. If it's been a while get a full blood count as well.

    No need to go to hospital :) Good luck with it.

  • Those conditions sound really nasty, Ozchick. I don't envy you trying to live with those. You make me feel quite whiny, complaining about my silly rash and itchy eyes!

    I'm going to go with the ANA test. They seem to use that first then use the others you mention as follow-ups, depending on what comes out of the ANA test. I think that will be quite enough for my doc to get his head around. Don't want to overtax the poor old thing!

    Thanks for all your help. It's really useful to know what's next if I DO get positive results from the ANA test. My doc kind of sits on his bum - he's not what I'd call proactive, so I like to be a step ahead to keep him moving!

  • No definite diagnosis ever for me from Immunologist despite blood tests etc quite frequently.Maybe R A, maybe Sjogrens (I am certain it is S.S) perhaps Lupus, maybe Sarcoidosis maybes all the time. Dry eyes and mouth have made life very unpleasant

    (my teeth all broke) but I am not as bad as many. Lyrica and Plaquenil have helped. The immunologist is very approachable. He said all my symptoms "add up" but what to? I am 80 now so I guess I will never know for sure and it doesn't matter much. Whatever it is hasn't killed me just made life very unpleasant. I hope things work out for you.

  • You poor thing, Willy, how awful. I know exactly what it feels like to have a condition with no clear-cut reason or even diagnosis. My trigeminal neuralgia struck out the blue and no-one has the first idea what causes it or how to help it, other than by taking powerful drugs - drugs which may well have induced this autoimmune problem I seem to be having now. There is nothing more misery-inducing that not knowing what is really going on or how to help yourself.

  • Forgot to say my first symptom was "burning mouth syndrome" which nearly drove me insane for years .Also major depression. Had my thyroid killed with RAI (radio active iodine).And still very few believe I have problems, my husband included.

  • I have heard people talk about burning mouth syndrome on the thyroid forum, but I don't know it myself.

    And how awful to not have your husband on board. I often think it would be great if we could swap bodies, like they do in fairy-tales, for a day or two. My first nominee would be my doctor - just about any and all doctors, in fact - just to let them see what it's like to have the conditions, use the drugs and generally have their lives screwed up. Bet they'd all be a lot more caring after that!

  • Me again, WIlly. Just had a look at Burning Mouth Syndrome on Dr Google, and it is VERY like TN, just a (far) less painful version. There is obviously some similarity between the two conditions. I find that very interesting indeed. I see they list possible causes as thyroid problems and autoimmune, amongst the usual culprits (stress, depression, hormones? When do they NOT cite those?), so there's obviously a connection here. If only we knew what it was!

  • Hi.....I have SS and now take Plaquenil and Mycophenolate which help. I also have a stingingly sore undercarriage because of dryness. (Anyone else suffer ?)Tried all sorts of OTC creams

    Do you see a rheumatologist ? Your GP should refer you and you should definitely have blood tests....they are pretty standard ( I am also in the UK)

    If you are diagnosed with SS you should definitely join the is a very helpful site .

    Good Luck !

  • Hi Bones, thanks for your reply. Funnily enough, I had been having such trouble with my 'undercarriage', as you so charmingly call it, that I'd done a run to the supermarket in desperation, looking for female hygiene products that might help severe itching, burning, chafing and all round pain. Even things like Kamillosan (Camomile ointment) weren't helping, and I have used fragrance and colour free pure soap for years, which only comes in contact with my rear undercarriage, not my front. But it was still stinging really badly, so in desperation I thought, 'I'll pay money, just give me something mild that won't hurt'.

    I looked through them all and nearly bought a wash for 'those difficult times of the month' because it was supposed to be dermatologically and gynaecologically tested', but then I thought I'd check the baby aisle, because that stuff has to be gentle, right? And I'm really glad I did. There, I found an organic bubble bath scented only with natural lavender and free of all the usual harsh culprits, AND it was marked down. I also opted for a soothing moisturiser, likewise unfragranced, and a 'liquid talc'.

    The bubble bath was brilliant straight away. No stinging, which in turn led to less irritation, which led to less itching and so forth. I used the soothing moisturiser for about three days and it was great. But by day four the bubble bath was so lowering the irritation factor I no longer needed it. Result!

    So my advice is hit the baby aisle. Not only can you find soap and fragrance-free things that are super mild, you also get them REALLY cheap because they are free of VAT. They were absolute lifesavers for me.

    P.S. Sorry, so excited to share my hard-won knowledge of the healing power of baby products I forgot to say I've had the ANA test and if it is positive I will push for a rheumatologist referral. No point in fighting my doc any further. He's made it plain he thinks I'm nuts.

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