Help please

[EveWarwick]

I messed up my appt with Rheumy, forgot about the dry mouth, but did say gritty eyes, think I had brain fog. My Dr told me yesterday my blood is Anti Ro positive at 194, I do not understand this.. Can somebody please advise me on the range. I am so fatigued I need some magic energy too! Thank you,

[panda2]

Hello EveWarwick,

I don't think any of us remember everything at our appointments. I always kick myself too when I miss a seemingly important symptom. But I suspect that saying about the gritty eyes might be enough for your Rheumy to think broadly. I took a quick look back at a couple of your previous posts and think I noted you've got mixed connective tissue disease diagnosed. Is that right? If so, you will be bouncing around a couple if not a few autoimmune conditions. All of them together or separately will be treated the same.

I'm diagnosed Undifferentiated Connective Tissue disease. Positive ANA and ENA positive with the same anti Ro+ antibodies you have. I don't know what my levels are, but the Rheumy said they needed to be treated. I developed extreme sun sensitivity which can be caused by Ro antibodies. I also had sudden swollen fingers that you mentioned in earlier posts. I found the Hydroxychloroquine stopped the RA process (mine was mild). Fatigue utterly wallops me too. It seems to come in line with the inflammation in the body and when some symptoms are at their worst, which creates cytokines and give the body the sensation of flu. It helped to understand this and know that it comes and goes, rather than just comes and stays.

I am assuming you are being treated with meds by your Rheumy? If so they should address all of your positive results and many of your symptoms, though I've found that some will continue to pester despite. And some conditions seem to beget other conditions, which hopefully your Rheumy will keep tabs on. The hope is to get you to a less symptomatic place. The treatments are mostly the same, so missing out on dry eyes isn't going to change a thing. Hope you're feeling a little better soon.

Panda x

[EveWarwick in reply to panda2]

Thank you so much Panda, I really appreciate your reply.

The Rheumy I think suspected Sjogrens, however he is not treating me at all and just said he would see me in a year. They did an ultrasound on my hands and said no inflammation, of course that was the time my hands were not swollen, although many days they are, as are feet. I have noticed cold sores on lips and nose recently, also stiffness in legs. Just so frustrated nothing seems to be happening with Rheumy, although my doctor has said she will refer me privately if we do not get anywhere in the next few months. Do you happen to know the range of numbers on Anti RO, I don't want to make a fuss if mine is not high, she has given me a blood test form for the next time things are bad so we will have three results. x

[panda2 in reply to EveWarwick]

Oh yes, I see why you are feeling distressed about missing the symptom at the appt. At the same time, try not to despair. Your Gp sounds like a good one with a game plan for you. I had symptoms from Nov 2016 and wasn't given tests until May 2017. And even after positive ANA and Ro in July, treatment only just started in Jan 2018. This does seem like a fairly normal time-frame judging from other's experiences on this site. I can't find anything on ranges of Ro+ antibodies. I don't think it matters -- positive is positive, I'd say, unlike the ANA where the levels can be explained by different body functions. But I can't be sure on that. You could try googling.

I did go to a private Neurologist (an appt made within a week of referral) when I got tingling toes and fingers and burning pain. That sped up the process significantly. He believed I had Lupus and/or Vasculitis and transferred me back to Rheumatology on the NHS and ordered scads of blood tests so the results would be in by the time of the Rheum appt 2-3 months later. So, I would definitely go this route (to another Rheum privately) if you get a flare or a collection of symptoms (old and new) again.

It's always the way that your symptoms disappear on scan/appt day, which seems to be the 'come and go' nature of autoimmunity, I think. The best way to deal with that, I've found, is to photograph everything when it happens and make a picture book, noting dates. Those swollen hands and feet, the cold sores, etc. This helps in not forgetting on appt day as well. The consultants are usually interested in the pictures and if they're not, show them anyway.

Try not to worry too much. You are in the system. And you have some options. But I more than understand, it's a pretty crazy feeling at the pre-diagnosis stage. You might be sure you have one connective tissue disease and it ends up being another or more than one or one that doesn't have a name. This is on their radar or you wouldn't have a follow-up with the Rheumatologist. Speed it up if you feel the urge to with the private consultation. But mostly hang on in there and try to take some control back over how your body is going wonky on you by recording everything.

All the very best.

Panda x

[EveWarwick in reply to panda2]

I really appreciate you taking the time to reply, thank you. I think we get so frustrated not knowing, diagnosis seems to take so long, although they are very quick here if it is RA, sometimes think that is all they are interested in. Auto immune diseases are in my immediate family, mostly thyroid cancer, goitres etc. so I am lucky to have got away with it so long, although looking back I was going to Dr with really extreme fatigue and other pains ten years ago. We shall see. Hope you are keeping well. x

[panda2 in reply to EveWarwick]

I do think there could be room for a Rheumatologist to say to us at first appointment that it could take months to know if there needs to be treatment and then it could take years to identify the condition. That would eliminate a lot of this frustration and distress and worry about treatment timeframes. Stay as vigilant as you are and squeak when you need to. : )

P x