After 8 years of me fighting with 10 consultants trying to convince them that my daughter has an auto immune inflammatory disease, last Friday they agreed. She could have been diagnosed when her symptoms first started but they didn't and waited for disease progression and positive bloods......and the damage that went with waiting for all of this. I know the meds are dire and they need to be sure, but this is the other end of the spectrum. I will take this further with all 10 consultants in due course. So angry as they could have stopped this damage.
I am told that there is no treatment for hypo active oesophageal muscles due to recurrent inflammation (dysmotility which causes breathing issues). Only prevent further inflammation, make lifestyle changes and prevent acid reflux. Is there anything else that can be done? Help....
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Mom2Danni
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It’s difficult to comment without knowing what the diagnosis is ( recurrent inflammation is a very generic term ) damage is and what medication is proposed.
Hi. They say her muscles are sluggish now probably due to recurrent inflammation, need to go on meds when she is diagnosed with lupus (next week hopefully), life style changes and acid blockers. Nothing more can be done. If it didn't take 8 years to diagnose this could have been avoided. So angry.....
I get the anger having had a prolonged diagnostic odyssey myself. The right treatment can make a huge difference to symptoms, if this is a rare symptom then finding someone who has a special interest in this may help.
Not trying to be dismissive of your feelings but the most useful thing for me was to divert my anger into action, find the best team to treat me and make sure I had access to the right medications. I took back as much control of the situation as I could.
I know and I will get there. but.....I think I need to feel this to move on......Too early for any Ghandi routine at the moment for me I think, as she is left with damage. I know I need to calm down and focus on the fact that at least we are getting somewhere now and they will be able to help her. I am angry because I told them 8 years ago this is auto immune inflammatory and we have a strong family history and they didn't listen...then damage....my daughter is relieved. I am angry and relieved at the same time.....I need to work through this....been an awful journey....
I have a slightly slow gut ( different thing ) but I have a brother with severe swallowing difficulties due to a totally different reason, but no breathing problems at this end - so take my advice with a grain of salt as its probably not relevant.
She might have to eat slowly and carefully - ( perhaps concentrate a bit more on it while she's eating ) - and there might ? be some foods that go down more easily than others - so avoiding the bad ones will make life easier.
For me smaller more regular meals are needed. 6 a day. (sluggish gut ? - but still waiting for a complete explanation for problem ). I can eat normal solid food 'now' - but soft foods are still easier on me. Being a bit lazy - I've gravitated toward supplementing my diet with medical liquid food ( Resourse 2.0 with fibre is my favourite) but only when I'm just too tired and impatient to deal with tiny meals.
For me I've been told to not drink too much fluid while I'm eating - so's not to overburden the whole process. but given you're daughters problem is her throat - She might need to have a drink on hand for coughing ?
Being young she'll probably be less cantankerous than me and adapt to the problem far easier.
We will speak to the Gastro next week. She cannot swallow without a drink now. Muscles immobilised in her throat and they should have given her steroids for 4 months but didn't,to prevent this. She has problems with her stomach too. Colonoscopy next week so we will see what's happening. She coughs and has chest pain - oesophagus. You are lucky if you have no associated breathing problems. They did check my daughters lungs and said they were fine. They said the oesophagus can affect the breathing.
I'm so angry that yet another delay in treatment - to yet another young lupus sufferer has bought on this level of potental damage.
I've had a squillion gastroscopies, colonoscopies - and all they find is mild inflammation and some mild scarring. ( don't drink or smoke ) I'm due for one of those robot capsules - ( if my GP can advocate well enough for me - expensive ) Many years ago a senoir rhuematologist did - declare - that the SLE had attacked the lining of my gut many years ago.
I do have very mild breathing difficulties which of course theyre putting down to panic. ( *uck them ) I dont have a panic disorder......A specialist did recently ask about my swallowing - but I still consider that bit of me - normal enough and as Im in recovery mode - I'm just waiting to see what mends.
Good luck to you both finding a - seeable cause for all this - that they can intervene with and treat.
Also - tell the people to do the procedure slowly and as gently as they can. Given she has Lupus - it's possible the nerves connecting to the oesophagus are inflamed with the flare. ( around the dorsal root ganglia ) This at least is the - theory of what's happened to me....... a contested theory - but I think for my set of problems - the most logical. (My stomach stopped at one stage and I lost 30 kilos - so don't loose hope of repair - whatever the cause) - also - if she has sticky blood - get that dealt with - it might be a clogged up blood vessel. ( another theory of what happened to my stomach)
All theories after the fact. Nobody would listen while it was happening. Just a hysterical woman loosing weight.
I was sick and bedridden for 2 years without being listened too while this damage was happening to me - and under treated afterwards. I'd already has an SLE diagnosis for years. Almost lost my Kidneys as well........now four years after the flare - they're finally listening regarding the digestive tract. ( I also take creon - for digestive enzyme insufficiency, B12 infections due to lack if intrinsic factor - due to damaged stomach lining - and now - iron infusions.
It's all so bloody unacceptable. I am so angry on behalf of you and your daughter.
I know. It's really difficult to accept all of this when the damage could have been prevented. 8 years ago I thought she had behcets. If all of this info is clear to a lay person, why do they keep delaying treatment? Lupus UK said I need to understand that the drugs have severe side effects so they won't treat without positive bloods? Waiting for positive bloods has meant disease progression and damage. Surely there has got to be a better way? I am going to discuss this with the British Society of Rheumatology and I am looking for people to share their stories. You have been through the mill too. They said she had anxiety and so did I ! Ofcourse I am going to be anxious when no one listens to me for 8 years and I watch my daughter fraying around the edges. I am taking this up with all 10 of them. She has raynauds, hypermobility and they say it's not lupus per se but definitely a CTD. I am hoping for a diagnosis of UCTD next week as she is still not on meds. Thanks for the advice re the blood clot and the nerves (need to be careful), I will tell the Gastro. Extremely useful.
When it comes down to it - 'validation of what you and you're daughter have been missing......and I'm always gobsmacked that validation fails when people become unwell with something not easy to diagnose - easier to say its hysteria - blame the victim - as a hell of lot of Doctors I've come across are incapable of blaming themselves - less work all round.
I'm from Australia - so my story of years of diagnostic delays might not be of help. I complained to the Australian Medical board. Apparently I made an impression - but at ground level - the same old diagnostic overshadowing nightmare just keeps on keeping on. Its hard to fight discrimination and the entrenched attitudes of Doctors and the medical culture.
Just be cautious about plunging into a complaint. I definately feel you're outrage but it might just tip you right over the edge. I'm still trying to regain my faith in humanity after the outcome of my complaint.
I'd had SLE for over 30 years and made my complaint with plenty of strong pathology evidence - followed by a nasty renal flare again overloaded with more evidence showing my Rheumatologist plainly just failed to act.
I did make a strong point regarding the lack of logic involved in labelling someone who had had SLE for 20 years with Fibromyalgia (and this man writing to every concerned Doctor that the flare was anxiety) but getting any basic justice regarding the lack of treatment - not a hope.
I got next to nowhere.- They didn't say it didn't happen - but wouldn't acknowledge it did. In any other medical setting this Doctor would have been struck off. In any normal moral setting - he'd be in prison.
Here at least - until we have concrete black and white - legally and medically recognised diagnostic guidelines and what are appropriate treatment and illness outcomes ( we need a lot of data collection and repeat research in this area ) - I think we might be badly flapping in the wind.
I am a lawyer. I just need to think clearly when I do this. I am in the hospital at the moment with my daughter. The same Dr who misdiagnosed her 8 years ago is on the floor below. I have never had to apply such restraint. His boss will be seeing Danni tomorrow and hopefully we will leave with a diagnosis of UCTD and a treatment plan. I will not let the misdiagnosis go. Her damage could have been avoided.
I don't blame you. I understand the complete rage and sense of utter betrayal.
Being a lawyer will put you at a better advantage than me by far. Here the complaints process is confidential and behind closed doors - but I believe there was a breach at one particular point - so I'm having nearly an impossible time finding a Rheumatologist.
Just don't frighten them away - like I might have done ? For now - see if you can find a middle ground - at least until the shock has worn off. Rheumatologists here will see me but make it obvious that I'm not going to get anywhere with them. The Doctors here are pretty powerful and will always put themselves and their careers and each other before their patients. Just tread carefully. A lawyer here told me I need to seek a Rheumatologist in another part of the state.......so take things slowly and carefully.
I really like love you to nail the
* astard and get a diagnosis out of these people - so you can both move forward.
But it might be just safer to just go for the diagnosis and tell this Doctor off face to face - and plainly point out to him what he's done.
You are Australian and I am South African, cursing and tempers run high on my side. Yes, I know about frightening them away. You have to go to another state? *loody hell. Who didn't do their job here? Patients only have one life to live. They had a duty of care which they did not discharge and they just want to forget this and fob you off? The thing is I kept saying this is auto immune inflammatory for 8 years and they just didn't want to hear it? This is why they fobbed me off. In the end they should have listened to me as a parent (they are smart and everyone else is stupid?)helped my daughter, not hindered the process and delayed diagnosis. You may be right though. I will not do anything when I am here, too angry. I will speak to him face to face afterwards. The Dr that she is seeing tomorrow is his boss. I think I just need to remain calm and state my case rationally and they will have to listen
Yep, Half the GP's in my town are South African. You can see them turning red in the face trying so so hard not to swear their heads off in a medical setting - and the tempers we know all about : )
Here swearing and - monstering with humour is practically a mandatory response to everything so it all evens out.
I think both countries are pretty good at direct plain speaking - it really cuts through complex evasion and chronic 'bovine poo'
My own GP's one of you lot - and I am yet to leave an appointment confused about anything. Sometimes I leave a little 'too' clarified (with the temper) - but he's been a good advocate and has been able to extract things from lazy specialists just from jaw dropping Machiavellian transactional techniques and a scary personality. He's currently chasing down a specialist for me as we speak. He's very popular here.
I come from an semi isolated community so have to drive a fair way for specialist care anyway - so going to a different area isn't a biggie for me, just a bit of a disconcerting period. I think it was a case of a Rheumatologist actually doing her job and wanting to source my old medical records that caused the problem. The polite way of doing it was ringing the evil doing ex - Rheumatologist. I wasn't quick enough off the mark to say - 'no - its all right - I'll bring you the record myself' when she bought it up...…..just not quick enough.
Anyway - I really hope you have a good outcome today and you can get some honest answers from these delightful scum bags. I also hope you don't become further traumatised by whatever comes out of their mouths on this occasion.
Don't expect too much. They either genuinely don't know what's going on yet - or will lie to cover past bad behaviour with a - "Oh this never happened" - kind of response. Don't be shocked - unfortunately this is normal.
Here - when they know they've done something devastatingly wrong - they just go to bed and wake up the next day as if nothing happened. I know they have to do this to function - but they leave their souls well and truly behind. I can barely consider them human anymore. I know this isn't terrifically PC for this site - but its the only way I can deal with them. No matter how psychopathic they get - I use up a lot of psychological energy - not taking it personally.
Just remember, right now just keep focusing on getting a clear answer as to what's going on with Danni.
Hi. I am glad you have a good South African GP. I think if we were in South Africa she would have been diagnosed in no time. Lots of auto immune inflammatory disease in Sub Saharan Africa. We were going to move to Australia (close to Sydney), but my husband is British so we decided to be with his family in the North Pole. Lol. So I did mention the behaviour of that other Dr who misdiagnosed her 8 years ago. I am going to lodge a complaint after all of this is over. I will not take legal action , but I will provide comments as it relates to his revalidation as a rheumatologist. I have my reasons for not going to court for the misdiagnosis on the first visit. We will not win. I aced litigation, so I should know better than to flog that horse. Its the opinion he gave on the second visit that I will nail him on, not the misdiagnosis on the first. I will lodge complaints against all 10. I have had a great deal of time to think. They said it is not lupus or a CTD. The Dr's are heading towards auto immune inflammatory disease only now? I'm a bit confused by the disctinction but will read some more. So now she has inflammation in her antral, both parts of her duodenum and thyroid. All tests are positive. I will e-mail the Dr's tomorrow about a final diagnosis in a timely fashion as a priority 1 patient so that she can start on low dose meds soon. They need to monitor her too (no meds needed during remission etc?).I have received good advice in this regard. HCQ is still the best for kids. Steer clear of steroids unless her muscles are threatened again. Then steroids for atleast 4 months and high doses then.
I feel like you do about clinicians, but I have come across 2 good ones amongst the 12 a holes. So 17% of Dr's you can count on? The luck of the draw. They should not go into this business if they don't give a sh..t. They need to persevere and keep looking no matter how long it takes, but that's too hard in most cases, or they are just stupid and you may as well google your symptoms? I will keep you posted.
Ahhh...... This is why my GP looks at me like an idiot when I try and tell him about an obscure lupus fact.
Being stuck in the Arctic circle 😁 - it might be worth talking to Wendy39 - she's had a good go at the complaints process there.
Just remember - ( here at least) normal morality or rules doesn't really apply to Doctors. They literally have to be something akin to a drug addicted serial killer before any action can take place here.
I'm very happy at least that they've gotten to the point of acknowledging auto - immunity. You would hope a more definitive diagnosis will follow ASAP and some treatment will start soon.
You're right - there are a few Doctors that can be relied apon. I know this logically - unfortunately just not emotionally.
Please keep me posted - and best of luck. You've got guts.
Xx
Quick thought, have they ruled out eosinophilic oesophagitis as a cause?
Hi. Okay I will watch out for prednisolone. They will however want to put her on the anti malarials. Need to check her eyes every 6 months. She is 15 so will be on this longer than most with a diagnosis later in life. I will discuss with her doctors
I have had this for almost 20yrs and have high dose Ranitidine daily as cannot take proton pump inbibitors. I am not sure there is anything as they have not offered it to me.
I have UCTD with GI issues. Very hard to get a handle on it all, right? What tests is Danni having? Has she already had manometry of the esophagus? There is a new video pill that is very helpful in diagnosing motility problems. Have they talked about this at all?
Hi Mom2Danni I have had many bad choking episodes. I mean, ‘really bad’. An allergist did a couple of allergy panels (?) on me. Apparently I have allergies to at least 19 (mostly very common) foods and 5 environmental allergies. Since finding out what foods trigger an allergic reaction (and my throat to close while eating something) I carry an epi pen and stay away from eating those allergens, though, sometimes they aren’t listed when eating out, or are named something slightly different when I read ingredients before buying at the store. But, since discovering those allergens and doing my best to stay away from them the chocking episodes have been almost nonexistent. Years ago they stretched my esophagus, which helped for awhile. They wanted to do it again this time around, but I said no. I can’t imagine that’s a good thing to keep doing. The time they did it they damaged my vocal cords and I would think that constantly stretching the esophagus would weaken the muscles? But, you might see if an allergist can find the cause or the triggers? Best of luck to your daughter.
Hi. Thanks for that. They said stretching would not help as she does not have strictures (narrowing) only sluggish muscles due to recurrent inflammation. It immobilises the muscles. Yes, they can only stretch so many times. What they should have done was to provide her with 4 months worth of steroids to stop permanent sluggishness and they didn't. We are seeing a dietitian in 3 weeks. I will speak to her about allergies and lactose intolerance. Thanks for your message.
So sorry to hear about your daughter, the stress on everyone is immense. I have just been diagnosed with the same but been told there is little that can be done. I am still doing my own research so if we keep in touch maybe one of us might come up with something 🙏🙏
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