Need an expert in autoimmune.: Well I am totally... - NRAS

NRAS

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Need an expert in autoimmune.

Mintychristine profile image
Mintychristine

Well I am totally baffled now. Today was my much waited for app with Rheumatologist. Now I'm Hypothyroidism just to add in. Anaemic since Jan but its improved a bit up take Sulph+ Hydro. but it stopped working ages ago. My joints damaged are ankles knees hands and shoulder. Anaemia meant endoscopy + two failed colonoscopy so had Mri felt less embarrassed when they said I had terrible leaky gut in knots Today it was to start mxt Arrived in rheum dept instead of outpatients I couldn't believe my eyes that the majority was female probs 60-65 severely disabled in wheelchairs recognised the hands and joint problems to mine but I'm mobile The cruelty of this disease just blew me away I've had this few yrs now and I've been downhill with speed. I feel massively flat disheartened and worried The other patients where completely reliant on husbands or family. Cut to the quick my billiary ducts are blocked and I need a some follow up from them. If its this causing my fevers and its treatable I will be ecstatic but if its Autoimmune ?? Does anybody know? Now I understand where the jaundice and few other things going on. My heart goes out to fellow suffers I realized that I must start better self-care instead of killing myself with ironing + housework I'm going try other things like short walk with my dog. Eat well Watch my weight ( I'm not over) but need better diet So start txt when my tests come back Cxr. Liver function etc. Just wondering if its Autoimmune is there txt??

5 Replies

I understand your concerns very well, its difficult, and painful and emotionally draining but there is hope with remission and methotrexate has been a great asset for me since 2002, I am 47. no expert by any means, and you have much to juggle I'm so very sorry .

I also took a turn downhill the past few yrs. with a great team of many drs an climbing up the hill. I had also been told the many complications I had brought me from Psoriatic Arthritis to now, RA Lupus Sjogren and, did get the gut feeling better after 6 months. reactions and infections. Candida. I balance, with methotrexate and be careful not to take if i feel I have an infection looming. I also have teeth destruction and had to get the broken pieces and roots out of tooth in sinus cavity. I'm ok, better than expected, antibiotics and get to take ibuprofen since no my right now.

prayerful that you start getting better bc and have easier days.

Hi, Its always a eye opener sitting in the waiting rooms. At least you are being treated early. In answer to your questions like RA some biliary duct conditions can be auto immune. Scans can show to what degree. You are right they can be flushed.

I have lupus, Sjorgrens and RA. As my RA is Lupus linked it is not destructive but it is inflamed and painful. I agree, slow down, do what you need to, its called pacing. Keep your joints flexible but supported.

I walk my dog (she runs round me) she makes me get out.

Thank you jewel and johare for your replies Multiple immune diseases seem to be killer. I'm going to try to use my little pocket of energy better. Jewel my gums have receded with the anaemia! I had them them whitened and was looking forward to smiling more! There's no plan b... take mxt work with it. Thank you johare about the flushing I didn't know that. If it stops my low grade fevers I would be a new woman. Xxd

Please don't feel despondent after a visit to out-patients. Most of us who are doing well will not only be attending out-patients very rarely (perhaps once a year) but will also look not only normal but very well (everyone says how well I look even when I'm feeling terrible).

The majority of us are coping OK, not marvellously, but leading a more or less normal life. My daughter cheers me up by pointing out that I am MUCH fitter than most people of my age because I look after my diet and exercise needs meticulously to keep my disease at bay.

I've had RD for nearly forty years. I am not able to do what I could twenty years ago, but I can still walk - did 9.7K with my son and dog weekend before last, though I was shattered (sorry Mum, got a bit lost!) and usually don't try and walk that far. I swim at least twice a week, do modified yoga, Alexander Technique and short bursts of gardening. I have to pace myself because of the fatigue, and no, I'm not as fit as my next door but one neighbour of 92, but he is exceptional.

So, you have lots to look forward to. Treatment now is SO much better than it was when I started and will go on improving. Tailored treatment for individuals is just around the corner - no more trial and error, how good will that be! And immune suppressant treatments, while not magic, do have a major effect on auto-immune conditions. Every reason to feel optimistic!

Well! Oldtimer by name but not nature! You're wonderful and yes you're completely right. I know everything you say and commend you. But you know when you're knees are like balloons and my ankles are no longer visable amonst thr damage and sometimes.. those Drs annoy me I wont bore you with trivia but honestly there not allways having brilliant days I hate going back and forward to GP's There's a couple of things could have been picked up earlier Once at the beginning I rang the Rheumy nurse and I was disappointed. At the start you're told ring any probs and they're lovely I myself was a nurse 20yrs ago Its resources I think that let us down. And the severity of this illness is often underestimated. I knew it varies in severity but not untill I was diagnosed did I really understand the immune problems that go hand in hand with it even though I remember patients that had RA. In outpatients you're blind to exact diagnosis and in clinic last time it was nearly empty Yesterday I was determined to say this and that and immediately saw several people far worse than me and not much older Im 59. So its humbling really And I have to trust the system Im going to put my brave face on and hope I get on ok with mxt. I will have to wait to see what these billiary duct blockage means. I dont think I'll be buying trainers but keep walking would be good I love your positivity though thank you Youngtimer xxx

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