Waiting for diagnosis

Hi everyone

I've had a horrible few years and have had one thing after the other and never any positive diagnosis.

I'm 58 now and have battled with persistent joint pain for a number of years. Despite numerous tests and appointments with a rheumatoid consultant, the conclusion was that they had no idea why I was in pain. I can't take anti inflamatories as they affect my asthma. So, I was prescribed amitriptyline and Tramadol.

Three years later and I am still taking the same things. But, around a year ago I noticed it was getting harder to swallow anything. This has been getting worse month my month and now I can only have liquids. GP wasn't interested so I saw a consultant privately and he arranged for me to be referred back to the NHS for a barium swallow scan. This showed that I have severe dysphagia. A further set of blood screenings were done which also showed up issues with my liver and borderline diabetes. Today, I had yet more blood tests and this time I've been told they are specialist screenings and looking for Lupus signs.

So, I was wondering if anyone else had experience with throat problems and Lupus.

Any help to understand would be appreciated.

Kr's

6 Replies

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  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    Diseases that affect the vascular system, include lupus, Sjogren's or scleroderma. In my next post, you might find the information helpful.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    With good wishes!

    Ros

    Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

  • Dysphagia and other manifestations of oesophageal involvement in the musculoskeletal diseases

    rheumatology.oxfordjournals...

    Abstract

    Oesophageal dysfunction can occur in a variety of musculoskeletal conditions, most notably the autoimmune connective tissue diseases. However, correlation between oesophageal symptoms and investigations is frequently poor. It is often uncertain whether symptoms are caused by the underlying disease or by its treatment. As the primary disease process may not be responsive to treatment, correctable iatrogenic causes should always be sought.

    Sjögren's syndrome

    Dysphagia occurs in three-quarters of patients with Sjögren's syndrome [15, 16] and may be related to a combination of lack of saliva and oesophageal dysmotility. As well as reducing lubrication and hence prolonging pharyngeal transit time, absence of saliva predisposes to dental caries and to oral Candida, both of which may impair mastication [17]; it also diminishes the acid clearance capacity of the oesophagus [18].

    Defective peristalsis has been demonstrated in one-third or more of patients with primary Sjögren's syndrome [16, 19]. Decreased or absent contractility has been shown in the upper third of the oesophagus [20], and UOS impairment may be more severe than in the other connective tissue diseases [1]. Other patterns of oesophageal dysfunction have also been described [19], including achalasia [21]. Oesophageal webs are found in ∼10% of patients [15].

    Oesophageal symptoms do not correlate well with manometry or salivary secretion [16, 18, 22] and other unknown factors may be instrumental in the dysphagia of Sjögren's syndrome.

    It has been postulated that the discrepancy between subjective swallowing difficulties and the lack of objective signs of pharyngeal and oesophageal dysmotility as assessed by videoradiography may be related to impaired parasympathetic function [23].

    Systemic lupus erythematosus

    Dysphagia occurs in up to 13% and heartburn in up to 50% of patients with SLE [24]. Oesophagitis with ulceration has been observed in 3–5% and oesophageal perforation may rarely occur.

    Reduced oesophageal motility has been demonstrated in up to 72% of patients with SLE [25] and, although the motility disorder is mostly mild, aperistalsis has been reported in 10–25% [26, 27]. As in Sjögren's syndrome, the upper one-third of the oesophagus is mainly affected [28], whilst the LOS is relatively spared compared with the other autoimmune rheumatic diseases [1]. The most specific disorder is an isolated abnormal peristalsis of the body of the oesophagus [1].

    The aetiopathological process underlying oesophageal dysmotility in patients with SLE is uncertain but inflammation of the oesophageal muscles or vasculitic damage to the Auerbach plexus has been postulated [25].

    Whilst dysphagia is typically related to GERD or stricture, swallowing difficulties may be exacerbated by recurrent mouth ulcers in ∼30% of patients and Sjögren's syndrome in ∼20%. Dysphagia can also have an infective cause, such as Candida albicans, especially in patients on immunosuppressive therapy [29]. There has been a single report of dysphagia due to epidermolysis bullosa acquisita involving the oesophagus [30].

    Dysphagia and GERD correlate poorly with oesophageal manometric abnormalities [24].

    Anti-phospholipid antibody syndrome, which usually occurs in association with SLE but can also exist in a primary form, has been linked to a number of GI manifestations, including a case of oesophageal necrosis with perforation due to vascular thrombosis [31].

    Mixed connective tissue disease

    Diagnostic criteria for mixed connective tissue disease [42] include oesophageal hypomobility (or dilatation of the oesophagus). Oesophageal involvement is found in up to 85% of patients, with dysphagia (38%) and heartburn (48%) being the commonest GI symptoms [43, 44].

    The pattern of oesophageal dysfunction is similar to that seen in systemic sclerosis. However, as well as diminished distal peristalsis and reduced LOS competency, UOS hypotension is also common [43].

  • Hi EdinaClouds, sorry you've had such a tough time and a long journey. Good on you for pushing forward for further testing. I hope you get some answers soon. I'm not sure about throat issues and Lupus (sure someone else will be able to advise) however have any if you Medical Team done bloods for Sjogrens Syndrone (also autoimmune and symptoms often overlap with Lupus)

    One of the symptoms of SS can be extremely dry mouth and deep throat (sometimes described as it feeling like the throat is lined with sandpaper)

    As there is a lack of saliva being produced the resulting dry mouth can make eating a difficult task, esp trying to swallow. When testing for Lupus one of the tests perfomed with look at your ANA blood leves. Depending on these results further blood tests may help to establish which autoimmune stream is likely to be the issue. So Sjogrens would be likely to be included in that testing.

    Hope I haven't overloaded you and that may help a bit. Please continue to remain strong (I know difficult at times) and I'm sending you gentle hugs and warm wishes from down under in Australia. Please let us all know how you get on.

    HopefulCC

  • Thank you for responding and for your very kind and helpful words.

    It never occurred to me that I might have lupus. But since its been suggested I've been reading up on numerous sites and am amazed that quite a number of known symptoms I have. I've never connected them before but now it all seems to make sense.

    Hopefully, I will soon have a confirmed diagnosis and can then get appropriate medication.

    Kr's

  • Hi Edina,

    I too am sorry for all the issues you are facing. I know how hard it is. Lupus can cause numerous problems but there are also other connective tissue diseases that are possible and overlap each other.

    I am glad you pushed to get some answers. Hang in there and I wish you the best of luck. Lupus and all connective tissue diseases are hard to live with but working with a good doctor and learning how to take care of you makes the battle easier.

    This site has also helped me so much. People on here truly understand and are very supportive.

    Hugs

    Tammy

  • Hi Edina,

    I'm so sorry for this long battle of health problems you've had and are still having. That's always the way - it's just one thing after another! Personally, I don't have any throat problems so I can't advise you from a personal perspective. However, my aunt has lupus, as well as me (aren't we a lucky family?) and she has had quite a few problems with her throat, eyes, nose and ears. They seem to be connected somehow. Her doctor is useless though so she doesn't even have a rheumatologist, just a GP who won't refer her! Anyways, she starting developing really bad symptoms. She had heartburn that would wake her during the night, indigestion even after a small snack, chest pain and difficulty swallowing. On more than one occasion, she started choking because the food just wouldn't go down her throat and it was just stuck there. She would retch and heave and try to cough it back up (sorry for the gruesome details!) After fighting for answers from her GP, she was sent for a endoscopy to see if they could find a blockage. It turned out that the problem was a hiatus hernia. Google this and see if the symptoms sound familiar.

    I thought I'd just let you know in case it helps in any way. Keep strong, keep fighting and remember that,

    Everyone wants happiness and noone wants pain,

    But you can't have a rainbow, without a little rain.

    Love and hugs,

    Suzy x

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