I joined in 2013 with a positive ANA Test 1:80 Nucleolar pattern suggesting schleroderma. I had follow up tests and no diagnosis. I’ve had 3 failed Endoscopes, as I woke up from sedation grabbing the camera, so Gastro has never found out, why I choke when eating, barium swallow confirmed GERD, I have awful acid reflux, recurrent eosphagitis. I’ve currently been put on the list for a Hip replacement too. I have Hashimotos, B12 Deficiency, Lichen Schlerosis.
3 weeks ago I paid for another ANA Test 1:80 Speckled Pattern. I had a telephone consultation with a Rheumatologist who is going to run antibody tests, kidney function test as I had an EGFR serum level 54, X-ray of chest and has asked the Dr to put me on Vut D with Calcium. Symptoms painful legs, (muscles, swollen red knee and lots of bursitis, still chocking, Raynards as a Teenager ( Daughter has severe Raynauds, even in the summer months) bloating upper stomach, so much acid, burping after eating, flatulence etc, dry mouth, dry eyes, lots of scar tissue from operations, hard skin on feet, red spots on toes, hot tight palms of hands and stiff legs when wakening, dry skin, peeling hard skin on hands and hard raised skin on finger knuckle, that this morning looks like it’s breaking open.
Does this sound like any off your symptoms? I’ve choked on my food for approximately 15 years, I have to get my back hit, to try and dislodge the food or air block, or what ever it is! I get a deep pain also in my chest when it happens.
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angelharley
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I have these most symptoms and a nucleolar ANA with scleroderma specific pattern related to this pattern. But due to no nailfold changes and atypical Raynaud’s, all my problems - including GERD, severe Gastroparesis and constipation - are blamed on my former diagnosis of Sjögren’s. You may want to look this up as it’s a very underdiagnosed and underestimated autoimmune disease - but there is much overlap. I too have hypothyroidism.
Thank you for your reply. Sjorgens is definitely a contender, blood tests are being done again in the next couple weeks of weeks, so it will be interesting to see what comes back. My gastric parietal Abs were positive in 2013 but had them tested with ANA and they’re negative now, so it’s possible I have Chronic Gastric Atrophy and this is the reason why they are gone? Also I’m not absorbing my B12 Injections effectively. I SI every other day and had the usual 3 monthly B12 injections at the Drs and for 2 years have SI fortnightly taking my Folic acid still and my level is only 250 and it should be into the thousands fir someone that has regular B12 injections. Unless they can do an endoscope under general I will never know. I’m also having a Hip replacement and was wondering whether a biopsy could be taken from the bone/ synovial fluid while I’m having this surgery. Wouldn’t it be conclusive if it showed an active antibodies for autoimmune connective tissue disease/Schelroderma or Spjogens?
I think synovial fluid is only tested for RA or inflammatory arthritis rather than the others but you could ask. I was originally diagnosed with RA ten years ago but that’s changed. I guess the thing to remember is that scleroderma and Sjögren’s are rare where RA/ inflammatory arthritis and pernicious anemia are common. So most doctors focus on the common before thinking to exclude the rare. Rare is much more heartsink for being rare. Less recognition, less treatments.
I’ve had same experiences of scopes at both ends as you. The last chap did biopsy for coeliac and another less commonly tested thing, identified mild gastritis with petechiae but wrongly attributed it to medications I wasn’t even on. And no one told me to stop taking 300mg ranitidine beforehand so I think I probably have autoimmune gastritis too. I take a high dose B12 sublingual daily just off my own bat so my B12 results are entirely skewed.
Anyway the gastro who did my last gastroscope did it himself and gave me maximum sedation because he was Spanish and he said his compatriots wouldn’t entertain having a gastroscopy any other way! So I genuinely was out of it. But he went back to Spain afterwards probably rolling his eyes in exasperation at what he called “the innate paternalism of the NHS”
I’ve just had a diagnosis of severe gastroparesis from a gastric emptying study and my entire GI system is on strike now so I’m eating little and losing weight rapidly. Starting a mostly sip diet this coming week when my pack of fortified drinks arrives. If I eat anything I’m scunnered and if I don’t I choke on stomach acid so there is no winning here. I’d swap back to RA anyday tbh - at least it’s a common and well understood disease. Hope you get answers and help soon and good luck with hip surgeryx
I don’t blame you!! I’m really hoping it’s not but I’ve got this little inkling it maybe. The choking on soft food, having to be hit hard on the back, to dislodge whatever it is, food or air bloc, is making me very suspicious, what with having autoimmune presence anyway. He’s testing Lupus, RA, Spjogens too. I’ll speak to him about the synovial fluid, it maybe an idea to rule out diseases. Maybe I’m over thinking but I’ve been in so much pain of late and having morphine now just to get through the day and to be able to walk with sticks. I still feel pain but it’s more so if I’ve overdone things and tried to do too many jobs in a day. My bloods have gone haywire too and I’ve had T lymphocytes raised for many years. This time they were reactive and raised.
Honestly the pain you’re in could be any of these diseases - although at least it sounds more musculoskeletal than neuropathic or vascular which is good as arthritis pain, horrible as it is, is often easier to treat. Joints are replaceable, nerves, blood vessels, liver and lungs are not. That’s the way I see it anyway.
You’re not over thinking things. However scleroderma is more associated with vascular disease and worsening Raynaud’s, digital ulcers, calcinosis, skin tightening I would say. Most people with Sjögren’s choke on food, aspirate and as this progresses often suffer from respiratory disease so could well be this. Strongly associated with pernicious anaemia too.
I don’t have Sjögren’s in my blood-work but I was diagnosed by lip biopsy. Mine is very like MS - essentially neuro Sjögren’s with dysautonomia - including the GI stuff. I hate neuro stuff more than anything! But my rare antibody is highly specific for systemic sclerosis - usually diffuse. So it’s odd that they assume my GI issues are Sjögren’s autonomic neuropathy. I actually hope they are wrong as there are no treatments at all although I’m on mycophenolate and Iloprost infusions.
Knuckle of hard skin and it opened the next day with a small amount of crusty blood. I’ll attach the day after photo, this happened this week. My ESR is 21 so only slightly raised but my knee has been inflamed one day and gone the next, I’ll attach a photo.
I’m really sorry but photos in comments can’t be seen on iPhones which is all I have just now. My ESR is always high - like between 50-80 - but they say this is just my normal with Sjögren’s. It’s not because methotrexate and Hydroxichloraquine got it right down and steroids do too. But after 3 years I couldn’t tolerate these.
Hello, I have almost all the same symptoms, and have been diagnosed with CREST SYNDROME. I would almost suspect this from what you’ve written however the ANA pattern specific to Crest is “anticentrome”. Not speckled. The swallowing issues is esphogeal dysfunction. I have had to have surgery for the horrible GERD ( I don’t recommend it!) you can have variations of Crest. Anyway, you may want to mention this to your Dr! Hope you get answers soon. Annette in Oregon, USA
Hi Annette, thank you for your kind message. I was looking at Crest Syndrome yesterday and will ask the Dr whether he thinks there’s any similarities. I really want them to get to the bottom of my choking issue, it’s very embarrassing when you’re with company and it happens and you can’t breath, or it feels this way. I’m just hoping they pinpoint a diagnosis and get me in the correct medication to make life easier. I feel confident with my Rheumatologist as he seems very thorough and he listened, asked questions and I didn’t feel rushed 😊
did any one do a gastric emptying study go get one done do not take no for an answer make noise demand they do it. peppermint tea, candy 1 hour before you eat slowly swallow them suck it gently that is what the doctor told me. prazosin for raynaud's. ask the doctor. cellcept, slindelifil, or try wild lettuce extract for pain mt rose herbs, ebay i use it all the time works great. meditation, mindefulness classes for pain, tai chi in a chair at home, yoga, art therapy, animal therapy, counseling can help. good luck hugs and kisses for a great day love julieanna
Hi if you're choking on a soft diet then I think you need to be referred to ENT and Speech and language therapy for a proper swallow assessment. If your swallowing muscles are weak or there's incoordination in your swallowing you might be letting tiny particles of food go down into your lungs, (microaspiration) which over time can cause significant lung problems. If you do have a recognisable problem they will probably suggest changes in the texture of your food and possibly exercises to help. I hope this helps.
I will speak to my GP on Thursday about referring me to ENT for a swallow assessment. Since I put the post up, I’ve been having like crawling sensation/pins and needles over the top of my back and a dull ache in my chest. It’s happening several times a day and as it’s a bee symptom, it’s a little concerning. I’m on morphine tablets for the pain I’m having with my dodgy hip and the I can still feel pain, hip, thigh, knee, front of shin. I’m not sure whether my bloods have gone haywire due to the amount of pain I’ve been in or whether it’s something systemic. Maybe I’ll start a new post reference blood tests. Thank you for your help Katie.
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