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Mom of 15 year old. Still no diagnosis. New to group

Primary care. What a waste of precious time. My daughter remains undiagnosed since the age of 6. At 6 she had symptoms of a MILD? "auto immune inflammatory disease" they said at Great Ormond. I begged the GP to send her as he wouldn't initially. Great Ormond stabilised her on 3 months worth of broad anti biotics (as they said it had an anti inflammatory component). She went into remission but it's back with dysphagia (over 25% of lupus patient suffer from dysphagia?) and 72% of these patients suffer from dysphagia because of oesophageal muscle motility problems. Today after the endoscopy they said they couldn't see anything and it seems like motility. More concerning is that my daughter said she had slight problems swallowing for the last few years but thought it was normal, so never mentioned it to me. Not true remission? Jan 18 she had a chest infection and it got worse with associated breathing issues relating to the dysphagia. Since 30% of all patients are never diagnosed with anything in the NHS this explains what happened next. We went from respiratory consultant to ENT (brilliant ENT then said it's dysphagia) to Gastro (15 months later and we had the endoscopy today). GP and paediatrician said - It's in your head, some things just cannot be diagnosed, sorry it's unexplained symptoms see a homeopath!.To make matters worse she is ANA negative. Up to 10% of lupus patients are ANA negative? You don't look ill and all this coming from primary care. As a mom I am exhausted. My daughter has been through hell and is seeing a psychologist.

Everyone played ignorant tag so I decided to contact a published author (rheumatology) by email as I thought he would be an independent thinker. He said wait a minute the livedo reticularis in her hands are normally associated with a sub set of lupus and told me to look at the diagnostic criteria. There are 11 internationally recognised symptoms? If you have had 4 of them at any time since becoming ill a diagnosis is made and positive ANA is not a pre-requisite? She has had 5 symptoms so she will be seeing a lupus specialist privately soon (associated with the lupus paed centre of excellence in Liverpool).

We have come this far despite primary care. They have actually just placed obstacles in our way. Better off going to a witch doctor for a serum? So much ignorance in the medical community. Everything I have learnt, I have learnt by reading and with the help of kind published authors and the ENT. Primary care have been no help at all.

I feel alone in this as a parent to be honest and I am glad I found this forum.

1)Any advice?

2)Anyone else with dysphagia and oesophageal motility issues? I'm not sure what we are dealing with. They only mentioned motility today

Noelene

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Welcome to this lovely page. You will definitely find much useful information here and people that can relate to your story.

I too have stages where it’s difficult to swallow. It is a very frightening experience so I do feel for your daughter.

Hopefully someone here can suggest a specialist in your area.

There are many stories on here where we are told it’s in our heads, you will find this fairly common.

It’s an awful position to be in especially when the bloods are not giving away the answers. Again you will find this quite common.

I hope you find this site very helpful

Xx

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Hi. I have just read that it's not the lupus that causes it, its the associated raynauds P because of certain antibodies in the blood? Is there any treatment that helps dysmotility of the oesophagus? Do they provide botox here to relax the muscles? Anything else that helps?

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Obvs, there's quite a lot of possible causes and treatments for dyphagia, not all connected to generalised gut dysmotility. I had dysphagia due to myositis last year, which resolved well after steroid treatment. But its definitely one of those symptoms that needs expert diagnosis x

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You gave me hope. We have been told there's nothing anyone can do about any of the symptoms. Glad you got help. I'm so glad I found this forum

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And me my swallow and neck are a massive problem for me xxx

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Hello Noelene

You must have been through a truly harrowing time. I do hope your daughter is coping with it all.

As you will see, the experience of having to do DIY diagnoses is a very common one on this forum. Partly down to the ignorance of clinicians, partly the sheer variety and complexity of auto-immune conditions, and partly down to an attitude that blood results are more trustworthy than the word of even the most sensible patient!

Anyway, there are definitely people here with experience of juvenile onset lupus (or other systemic autoimmunity), including with gastro- and/or gut motility problems. Barnclown springs to mind (I think she's pretty preoccupied atm, but Im sure others will pop up).

The only thing I'd add would be to keep a symptom diary. Using the LUK leaflets on the 'Home' page here can be handy as ways of checking that you are monitoring the most relevant things). Also, if your daughter's psychologist is a good one, do use him/her. Regardless of the reason for referral, some of the coping techniques they might coach can be useful in lots of stressful situations - midfulness, calm breathing, and so on can be handy in any case (I think that's a lesson I've learned throughout this journey - if you get a good clinician, squeeze them for every last drop of advice, regardless of their specialty). Anyway, hope the consultation goes well. I'm sure others will be along with more practical thoughts x

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Hi

The funny thing is everything is available on the internet. Dr's don't bother diagnosing anymore? If it's not easy forget it ? No time or effort dispensed? She has an appointment with the lupus specialist in less than 3 weeks now (just booked it) and they will be doing a full body MRI on the day. She has given up and it really upsets me. Too young for this. I hope it will be better when the disease is managed. The doctors hate me though, but I won't give up until my daughter gets the help she needs. Quality of life......

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Keep on going. There’s a reason for everything. There’s also a lot more bloods that can be done if you see the right specialist. X

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I asked the British Society for rheumatology to send me the diagnosis, review and treatment manual. They did. They also helped me track down that published author who said, I need to tell them to consider lupus. I looked at the blood tests. Its war and peace and I have read it. Scared me though, understandably. The doctors have only done ANA and ANCA and ofcourse she is anaemic and has low vitamin D. I have started her on iron and low dose Vit D and it has helped alot with the fatigue. No GP to help, so I bought it over the counter.

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Keep an open mind with possible diagnosis, as many of these autoimmune problems mimic each other. I often say this “to end up on this site is a sure sign that someone is poorly and not getting answers.

There are a couple of mums on here too with teenage daughters, so hopefully they will reach out to you xx

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I know. It could be one of 15 things? Looked at that too. If the Dr does not diagnose lupus perhaps she could say what it is, so that we don't start from scratch each time she has symptoms. If you have a diagnosis it adds weight when you explain your symptoms as opposed to then saying "its all in your head". Long term damage without management is also our concern.

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Hopefully something is picked up on from the start. Unfortunately new symptoms can come and go which sucks , but as whisperit said, do keep a symptom diary. These can be a very useful tool to the right specialist

X

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Will do thanks. Really helpful. Thank you so much.

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Do keep us updated.hoping your daughter gets better real soon x

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Will do. This consultant is really good they say. Not cut from the same cloth as the others so we may be in good hands, hopefully. Keep well and I will really use this forum as a resource. I am not able to speak to other parents or people about this. No real support groups and I really need support and to keep my chin up if I am to be of any help to my daughter.

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Hello Mom...am glad whisperit alerted me to your post (he is right: am distracted at the mo getting ready for spine surgery & starting IVIG).

The wonderful response you’ve received is what LUK & this uniquely special forum is all about

there is v little i can add to the great replies that’ve poured in. am so glad you’ve found us...and i think you really are exactly the proactive, well informed, determined patient advocate we all dream of having by our side. I hope you’ll keep us posted as you and your dear daughter navigate the diagnostic & treatment “process”

Just to explain why i think whisperit mentioned me: my lupus was diagnosed by a NYC medic in 1954 when i was just beginning to walk. Back then lupus was a killer, and tests + treatments very basic. My impression is that because i survived the rashes that led to my diagnosis, my poor mother basically decided to pretend lupus was ‘normal’. She, my father and GPs never told anyone else about my lupus. Each flare, emergency + every day to day manifestation was treated individually.

I survived growing up, albeit uncomfortably & with constant hypereactivity to lots of things - we now assume my lupus was relatively mild, and maybe relapsing + remitting, but i always felt sickly compared to others of my generation around me. By conscientious lifestyle management, especially pacing all activities, i completed 2 univ degrees.

At 21 i moved to the UK and remained. Of course, the NHS took me on as unaware as i was of the lupus underlying my progressively debilitating multisystem manifestations & emergencies. i managed to have a successful career thanks to very understanding employers

it all progressed for 40ish years until a brilliant univ hospital rheumatologist rediagnosed me in 2011. My mother’s response to this was: but dear you’ve ALWAYS had lupus! My reply was: what’s lupus? My Rheumatologist, Immunologist & other consultants say my condition now fits with my mother’s story about the 1954 diagnosis. Thanks to my team of clinicians, i’m now feeling better than i have since childhood

I have been managing slow transit dysmotility from mouth to a*s ever since i can remember. There definitely are ways to manage this via self help/lifestyle techniques + complementary therapies + establishment health system care. Your description of your daughter’s issues makes me wonder whether she is showing signs & symptoms of hypermobility, specifically Hypermobile Ehlers Danlos Syndrome. Hypermobility is a connective tissue disorder which can overlap with lupus and features GI tract dysmotility. Here us a link to our wonderful officially approved UK support group - it has really good info:

ehlers-danlos.org/what-is-eds/

Also, although unusual, seronegativity (being ANA neg etc) can be due to an overlapping simultaneous immunodeficiency, eg i have been diagnosed with early onset Antibody Deficiency Disease (hypogammaglobulinaemia) in which immunoglobulins G, A & M (IgG, A, M) are chronically below normal reference range rendering me unable to produce antibodies. So i am always seronegative, but even so i do meet enough of the other official clinical & immunologic criteria for SLE. Do you know your daughter’s Ig levels? Low immunoglobulins (Igs) predispose us to complex persistence pattern infections...your daughter’s seem similar. Here is a link to our wonderful officially approved UK support group - its info is really good too:

piduk.org

I hope something in there is useful. Apologies for going on at such length. Take care & please keep us posted 🍀❤️🍀❤️ Coco

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I hope your surgery goes well xx

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Thanks lisalou...it was meant to be last friday, but the consultants decided i should start IVIG first...hopefully will have the op this summer! XO

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😔 sorry you have to wait longer for the op, but at least they are making sure you are in tip top condition for it x

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TOO TRUE! I am V lucky & V grateful to me medics XO

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Hope all goes well barnclown xx

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Thanks v much buckley XO

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Hi. I hope your surgery goes well and I read about IVIG quickly. A great deal to learn. I wish you a speedy recovery. Ironically I have been talking to Boston Childrens Hospital in the USA as I gave up finding help here. Hopefully this Liverpool specialist will diagnose soon, if not back to plan B.

Immunoglobin was within normal range. White blood cells and haemoglobin (anaemia?) below range. Yes she was diagnosed with hypermobility, so it could be EDS or the raynauds causing dysmotility. She may have had inflammation which caused it too but nothing there now and no scarr tissue, just lax muscle, dysphagia high up in the oesophagus and the breathing issue.

Don't apologise. This has been invaluable. Dr's consider symptoms in silos, this brings everything together. Makes more sense that any conversation I have had in the last 15 months of my daughters dysphagia.

When you have a moment please tell me more about dysmotility management across the 3 areas you mentioned. self help/lifestyle techniques + complementary therapies + establishment health system care

Thank you and Hugs

Noelene

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Gosh...wish you’d been my mother! It’s SO GREAT to meet you and witness your approach to this...i’d LIKE to think i’d be similar had i not been infertile (another long story - due to my inutero exposure to the internationally notorious artificial oestrogen DES (diethylstilbestrol)...which my medics think probably tipped my genetic predisposition over into the V early onset SLE + PID

You’re V welcome! Am glad if anything i offer up is useful 👍

So, yes: from early childhood i’ve been managing slow transit dysmotility mouth to a*s which has been gradually diagnosed, as per usual, bit by bit the length of my GI tract. But, unless manifestations are severe sudden onset, i always start by figuring out & conscientiously employing first line self help + OTC/complementary therapy treatments before i resort to seeing medics.

Here’s a sample Re what was gradually diagnosed as oral inflammation + ulcers, dysphasia, oesophagitis, gastritis, gastroparesis, duodenitis, visceral hyperreactivity + constipation, teen onset prolapsing strangulated piles etc etc:

- When i was growing up, my mother was devoted to healthy eating as promoted by the famous USA guru Adelle Davis - so i managed this GI stuff via the usual stuff: eat balanced diet with plenty of roughage & avoid processed food. Sip fresh Ginger tea eat slowly, chew well, exclude what triggers symptoms, small meals with healthy snacks in between. Plenty of water. No eating late before bed. Bedhead raised. Etc..the usual, really...but conscientiously all the time or i deteriorated...all V boring for a young person...put a damper on social life...but at least i learned early to recognise true friendship & to learn self reliance/independence

- when my condition became uncooperative + severe enough to consultant medics, my first real horror was a full on haemorrhoidectomy in my 20s in the 1980s...which i probably should’ve had years before, but i was too shy, embarrassed, frightened. After that i intensified my research into managing constipation via nutrition/diet: i never resorted to laxatives because instinct told me i’d hyperreact (later i was proven right).

Over the decades GPs clinically diagnosed hiatus hernia (incorrectly of course) and prescribed stuff that couldn’t/didn’t help at all with the AID + hEDS + PID underlying causes, eg antacids of various types etc .

Later as gastro investigations became more thorough, Rx long term treatment i responded pos to included daily domperidone + PPI for 6 years while independently i focused on figuring out which Low FODMAPs suited me (of course i’d already had a big headstart understanding this due to Adelle Davis...& also my husband’s early onset Crohns Disease). Conscientious Low FODMAP exclusion diet kept me going until my 60s

- i’m advised i’ve done extremely well managing all this till 60 with so little reliance on Rx meds. But 5 years of increasing malabsorption + hyperreactivity alongside multidiscipline investigations culminated in a critical obstipation incident last year...when i deteriorated enough to meet NHS criteria for Exclusive Enteral Feeding (EEN) - luckily i can take this by mouth - which, one year on, alongside my combined therapy SLE + PID meds, has me thriving WITHOUT any horrible gastro meds’ side effects. I don’t miss food at all now my GI tract is more functional than it’s been in decades. And the wonderful joined up long term tertiary care my univ hospital is devoting to my case has me generally feeling better & better..lyes i had to work HARD to help my medics figure my case out, but the effort is paying off BIG TIME

Am sure that’s more than enough....

Your daughter’s hypermobility diagnosis will hopefully help you a lot to get on with trialling the sort of dysmotility management that REALLY helps while the health system figures out her version of immune dysfunction + connective tissue disorder & which treatments can help most. HAPPILY relatively recently a BRILL new officially approved BANG UP TO DATE book came out on all aspects of hypermobility...it includes FANTASTIC comprehensive info + advice re gastro issues inc slow transit...when posted about this here (inc a link to the book source) there was a great discussion - i’ll add the link to that discussion in a PS

Also, have you joined/posted on the HealthUnlocked EDS UK community forum? There are lots on there diagnosed with hypermobility (not yet hEDS) - it’s a great group attended by quite a few very knowledgeable, helpful folk:

healthunlocked.com/edsuk

Wishing both every best wish 🍀❤️

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PS here’s that link to our discussion here about that WONDERFUL Hypermobility guide (the link to where you can get it is included in the post):

healthunlocked.com/lupusuk/...🙋🏼brilliant-new-guide-to-everything-re-hypermobility-ehlers-danlos

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Thank you :)

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🤩👍🤝🤞✌️😍

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As the they say life is struggle. Then they try and teach you how to cope with it. I'm trying to be mindful through all of this . Lord knows it's taken it's toll on Danni and the family. At least you can joke about things like mouth to AhoI*. lol. I am still getting my head around this. It hasn't been easy for you either yeah...You would have made a lovely mom. Trust me I know these things. I watched Danni. This is with regard to your comment relating to piles so that's another thing to be checked out. Hard stools despite the fact that she drinks loads of H20 but no constipation. I hear your comments about a healthy diet and nutrition. I have made notes. Thanks. I have to ease my daughter into copying with this once we have a confirmed diagnosis. It's a lot.

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Thanks Noelene...am sure you're doing your best to Take Care of yourself as well as Danni + the rest of your family...you mums have an ULTRA tough job & need all the support you can get : there is LOTS of that here, as this wonderful thread proves 💐🍀❤️

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Love the way you describe mouth to a... stuff. But yes my slow transit from young. Also I have always needed water /liquid to be able to swallow my food from young. xx

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Yep...me too...i also figured out that i did best to have a few sips of something liquid or smooth like yogurt to lubricate throat BEFORE even trying to swallow anything. AND sitting/standing up straight with neck extended like a giraffe has ALWAYS helped things slide right down my gullet..my neck is quite long - some say i’m like a giraffe 😉🍀❤️

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I have a long neck too, wonder if its the EDS and hypermobility . Still neck not so swan like right now re pred . I can remember eating at my Aunt house and being told " we do not drink with our meals until afterwards" and i replied " i cannot swallow if do not drink and my mother confirmed i needed the drink. strange times dear giraffe. xx

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What's the weather like up there? It's cold down here. lol

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So does Danni.

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your both very welcome. xx

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You should give yourself a big pat on the back for being such an amazing mum and have kept looking for answers. Always trust your gut feelings. So many have found the journey long and frustrating and i hope you get some answers soon. There is so much good advice hear so i have little to add. Take photos if have any to show, think about any skin issues and also familiy history. Good luck and keep us posted, Lou x

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Hi

Any mother would do anything for their child. I just want to see her stable so that she can be 15. I have found this very usefull. Questions I will pose to the Gastro at the appointment in 2 weeks.More knowledge here than in primary care. There needs to be more education out there and I will speak to Lupus UK about what is being done currently to educate Gp's who should be acting as gate keepers into secondary care with an informed referral? Long delays in diagnosis carry risks. Loads of auto immune inflammatory illnesses on my side of the family (all the women). Danni has Livedo reticularis like raynauds and mild exzema. Rashes previously. Some hair loss, others symptoms too. Thank you Lou.

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Some of us were delayed in diagnosis and have had our frustrations with the medical world. I think this is why there is such a strong urge to help when people come on site. Plus as you say we must make this a higher profile medically.Saying all taht there are some really good consultants too.

The fact that you have such a strong familiy history is important so think about their symptoms and order of presentation etc. List the rashes and also consider taht they can be misdiagnosed. Exzema and some type of phsorisis can be confused etc. I myself was a missed childhood diagnosis but that was a long time ago . xx

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Thanks Louise

Another missed child diagnosis then?......I have made that list already. The consultant (paed rheumatologist) from the lupus centre who is doing the full body MRI in 2 weeks has seen it already. I made the familial history list, her symptoms and the fact that she is part sub-saharan African. 1/3 to be exact she say's :) but that makes her more prone to lupus in terms of ethnicity. There is a need for this site so I understand the strong urge to help. I feel empowered by all of this support. Thank you so much.

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Yes you are are so right re Lupus and ethnicity. I think i was just born in the days before so much was known about Ai stuff, bit long in the tooth now. Keep pushing for answers bloods are not the be all and end all. Hope that MRi helps. Wishing you and Danni a good bank holiday Lou xx

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Same to you and yours

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It must be devastating to see your young daughter suffer like this. It does sound like she is a particularly challenging diagnosis. The most important thing is whether her symptoms can be addressed. You mentioned going to a specialist. I think if you can manage to see a pediatric rheumatologist, that would be valuable. There are not many of them around. But they know the unique ways children with autoimmune diseases present. Motility issues are not that uncommon. There are specific tests they can do for your daughter. You really need to be at an academic center where they have advanced diagnostic techniques and doctors who are familiar with adolescents with autoimmune disease.

Can you get to a Children’s Hospital? I don’t know how it works in the UK. Complicated pediatric cases are best handle in centers that specialize in the care of children.

Do not hesitate to reach out for support.

Nothing harder for a mother.

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I think your daughter needs to see a consultant paediatric lupus specialist at one of the UK LUPUS CENTRES eg. St Thomas’ Hospital, Birmingham etc.

These centres are specialist NHS centres and from what I hear you will not be fobbed off with bovine scat!

At least you can be assured one way or another that it is not lupus?...Or?

Good luck for a definite diagnosis, treatment and management strategy.

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Hi Phillippo

Birmingham children's hospitla - rheumatology refused to see her. They said her lupus like symptoms are not included in their clinic eligibility criteria. Can you believe it? It took them 5 months to tell me that. Gosh said it's a mild auto immune inflammatory disorder but retracted when ANA was negative. Addenbrookes said nothing is wrong at all, despite all her physically visible symptoms like the mouth ulcers, rashes and arthritis. So there is a Paed Lupus centre of excellence at the Alderhey childrens hospital in Liverpool. My daughter is seeing one of their consultants privately in 2 weeks and she already said she will be doing a full body MRI. Yes, I agree. When we know what it is it can be managed. Thank you for your well wishes.

Noelene

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Hi,

...” So there is a Paed Lupus centre of excellence at the Alderhey childrens hospital in Liverpool. My daughter is seeing one of their consultants privately in 2 weeks and she ...”

============

Best wishes.

I hope it goes well. Many ANA tests involve tissue biopsies which involve specialized microscopic examination of the cells within the tissues under certain lighting conditions eg immunofluorescnce and counting numbers of cells glowing in that particular light/mm2.

Not an expert but these test labs are far and few between. I think only specialist Lupus docs can explain these results but?

Eg for skin, kidneys etc tissue samples must be obtained but perhaps there are other ways now?

Wonder if MRI is powerful enough to pick up the ANA “sticking” to those cells? Perhaps it’s one of a number of techniques?

Keep questioning👍👋

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The Dr is doing a full body MRI at the appointment in 2 weeks. It seems she knows that she is doing. Fingers crossed. I have said this before.

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Hi Mom2Danni, yes indeed I had galloping dysphasia when I had a very severe flare in 2012. I dropped down to just 6 stones. However, like you and your daughter I encountered a lack of understanding about key lupus symptoms and found information scattered worldwide. The 11 point list you refer to is the American College of Rheumatology (ACR) diagnostic criteria, which lists those symptoms indicative of lupus and at least 4 have to be met. Because I felt so bewildered and uncertain when I was diagnosed, I wrote a book last year, which was published just two months ago. It is designed to be a lupus handbook and has been very well received by members of this site (who contributed to it) along with 5 star reviews on Amazon. It is called "How to Stay Sane in Pain - Clarity, Resilience and Calm with Lupus". It is available internationally including Japan and Brazil! Fuller details are available on my profile but if you just put the title and Amazon into Google you will get straight there and there is a full look inside feature. You will find a full explanation of the 11 point checklist on page 7 and of dysphasia on page 48, as well as pointers and advice elsewhere. I wrote it so that others did not need to feel the same level of confusion and despair that I did at the time. Do let me know if I can help further - your post chimes with my own experience and I too had my first lupus symptoms around 15 years old. The story is in the book. With my very best wishes Lily

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Hi Lily

My daughter had her first symptoms when she was 6. Catalogue of lupus symptoms. They they put her into remission without a diagnosis. She never told me but she has been struggling to swallow food with ease since then even though all the other symptoms went. She was 6 and thought it was normally. When she was 14 she had an infection and the dysphagia stepped up to include breathlessness. She stopped alot of activity. Well done on sharing the knowledge. I will definitely have a look online. Look after yourself. Noelene

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Hi Mom2Danni n welcome to this forum 💐u have definitely come to the right place..their r loads of us here n we were all out in the diagnostic wilderness at some time or another..some for many years as u r finding out!! However don't despair u will find info n advice..tips for coping..discuss any new symptoms n generally support through the tough times..we have been known to have a good giggle sometimes too!!

Definitely have a look at lupusuk website..u can join them for £10 per year n they produce a quarterly magazine which is very informative..they also have a list of telephone contacts that have lupus or r caring for someone with lupus..they also have some young people on that list who offer a listening ear n support for other youngsters.

Keep a symptom diary n take photos of any rashes or other skin problems.

Be very careful with your daughter in the sun..many of us have photosensitivity to uv light..again lupusuk have a link to eclipse which is very informative about light sensitivity..not everyone has it but I would say that the majority of us have to wear factor 50+ sunscreen..hats..sunglasses..cover up with long sleeves n trousers..even on cloudy days..as your daughter's very young I understand that could be a bit tricky but the sun n even flourescent lighting causes me lots of problems.

Lily's book I'd recommend as easy to read n understand so u n your daughter can get educated/informed about lupus.

Before your appt with specialist write any questions that u would like to ask..very often first appts r confusing with lots of info so I would recommend that u have something to write on n refer to at later dates..there's nothing worse than coming away from appts n thinking 'oh I forgot to ask about that!'

Until I was diagnosed I had never even heard of lupus n yet there r 5million people worldwide who have it!!! This site has literally been a lifesaver for me..u n your daughter r not alone 🤗🤗🤗xx

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You made me cry. Kind words. Thank you. She is not UV sensitive. Yes, I have complete files and questions for the next 2 appointments. One with the Gastro and one with the rheumatologist. After diagnosis, I will sign up. My daughter will need support and I will get the book.

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Awww every mum worries about their children..always whatever their age..so I hope u had a good cry..no more worrier..now your a warrior..protecting your young!! Be strong 💪xx n big cyber hug for Danni 🤗🤗🤗xx

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Thank you. I did. I realised that the ignorant Dr's made me feel hopeless and that changed my perspective. Food for thought. Warrior mode - I will find a Dr who is not ignorant and I will go to Boston childrens hospital, USA with her if I have to. I am in contact with them already. This local dr that we are seeing in 2 weeks specialises in lupus though (Liverpool and a lupus centre of excellence), so hopefully that won't be necessary.

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No you are most definitely not alone and I just don’t think some doctors care. I feel for you truly. I have seen two rheumatologist who are diabolical, dismissive and disinterested. I feel whatever is wrong with me has been years coming with slight problems , about 5 years ago my old go suspected lupus but tested negative just been tested negative again but myriad of symptoms which flare then next flare something else. Just been through weeks of hell with constant face drop eye and mouth one side but been happening for 2 years , it started just the eye dropping intermittently then mouth joins in slightly and can’t flex foot or toes intermittently plus all signs of lupus. Had ent last week as he was concerned about lymph glands and head nasal pains that are debilitating but rheumy just says fibromyalgia. There is too much more going on for that it’s all making me feel crazy though I know deep down I’m not 😂🙈 I have just bought an immunology book to read and scout everything just trying to piece it all together but am at a loss and at the end of day it’s not down to me it’s their job but they’re failing. I am 49 so ageing but don’t think age warrants all this my dad is 83 and fine, gereateic but fine 😂😂 I do hope you find the help , and some answers , no it shouldn’t be down to you and as a mother to a daughter too it must be very hard to see your child sick with no answers. Equally my daughter is struggling with me being ill with visible signs but no answers and is frightening for her too. But I have found on here you are not alone , this community on here has helped me find it in me to keep pushing for answers not that I’ve gotten anywhere yet or likely to but I will keep going for as long as suffering. Best wishes to you and your daughter and good luck

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Hells bells. I see your fibromyalgia and raise you CFS / ME, whooping cough, post viral phenomenon, in your head and see a homeopath. I had words with my GP yesterday. The consultants are no better bar one or two. No you deserve to be listened to. When they actually said CFS/ME (a consultant) I said you are only diagnosing what you know. Your clinic sees a lot of patients where a GP suspect CFS / ME? He acknowledged yes. The diagnosis needs to be guided by accuracy in terms of the symptoms as opposed to fitting your box. If it is CFSME start the treatment and her symptom should subside. He said, rather not? Hell. They are failing so it is down to me. Snap and yes it is extremely upsetting seeing my daughter like this. I love her very much. I won't stop until she is diagnosed. No answers is frightening for her especially when they keep saying you are ANA negative despite the fact that up to 10% of lupus sufferers are. No sense of security in terms of this is what's wrong and this is how we are going to manage it. Lol.....your dad. I am 47. We are not old! I surf.....true story....I hope you find answers. It's tiring but you need to challenge them every step of the way. I don't care if I make people mad. This is my daughter. We will get there....You are lovely. Good chatting with you. Things have changed since yesterday. I no longer feel alone in this. Worth more than gold.

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Nice chatting to you too and sincere in hoping you find an answer. Yes I think it don’t matter how mad you make people when you’ve been made feel mad for so long. No I know what you mean . I’m given sprays for nose sprays for ears cream for rashes tablets for pain creams for pain braces for knee and hands and back shampoos for head creams for ulcers tablets for acid dry eye drops yet nothing linked. Breathing and raynauds just get on with head and palsy being looked into but guess that be given something for 😡 you’re definitely not alone , thoughts are with you and daughter, keep checked in on your journey. All the best 🙏

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I might be the slight odd one out here, but If you haven't already - I'd take you're daughter to a neurologist. Some of them specialise in autoimmunity - and in a perfect world would know how SLE lupus effects the nervous system. Just a good and respectful one with a lot of experience should do.

Good luck finding an answer to you're daughters problem.

X

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I have been guided by her symptoms. She only had headaches when she first got ill at 6 and other random lupus symptoms on the international diagnostic list. No seizures, confusion or memory issues. The GP said rheumatologist because she had arthritis amongst other things and really bad tummy pain. I contacted a lovely published rheumatologist too who has been helping me via email (as he is retired now). He was not obstructive like the rest of them. He said a paediatric rheumatologist and Gastro and he was the first person who mentioned lupus recently. She is seeing a paed rheum in 2 weeks who specialises in lupus and a Gastro who has already done an endoscopy. He said if that fails go to a dermatologist as she has very evident raynauds / livedo reticularis. Thank you for your concern.

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I've had SLE lupus since the age of nine - I'm now 51. An unfortunate few of us end up crossing paths with a neurologist eventually. They not only deal with the brain - but the peripheral nerves that connect to the internal organs - and pretty much everything else - including the digestive tract. This was the kind of thing that was tricky to diagnose with me - I have mild gastroparesis along with other digestive problems associated with lupus.

I think neurology would be a good - ' just in case referral ' - to cover all bases. With Lupus it kind of stock standard to see multiple specialists - to cover all parts of the body. A hell of a lot of it is a waste of time and energy in most instances - but its necessary for this kind of illness.

I'm glad she's seeing a paediatric rheumatologist and gastro. I really hope you can get a good and clear diagnosis for you're daughter and gets her on track to being well.

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Hi. I'm sorry you have been through so much. Danni is having a full body MRI on the 21 May. The Dr is checking everything. I will speak to her about neurology. I will add it to the list of questions, thank you.

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I totally agree with many of the suggestions here on this post for you and your daughter.

I understand because I live with Lupus, and my daughter was having some of the very same symptoms starting after 12 years old. I watched her for two years and realized I had to get her into see a rheumatologist because it looked too much like me.

My rheumatologist would not see her, we had to see a "pediatric rheumatologist". I took her to up to three different rheumatologist before she could get a diagnosis and that was after she turned 18.

She went to college with her autoimmune disease diagnosis and was able to work with the college to get special transport from class to class if there was a long distance and walking, they were able to work out for her to take test in a special location if it was hurtful to her back , She also was able to take a heating pad in the class and pillows for sitting, but she was able to complete four years of college & two years of masters program and now working for the first year eight hours a day.

Living with a chronic disease she did learn that we have to definitely "plan rest times" along with our work times – and friends that come and go we're never really truly good friends, she learns to work within her body limitations and brings people into her environment.

She became part of an "online support group for young people living with chronic illnesses" that was really great for her to be able to reach out especially during the college years – because people were playing way into the night and she was not able to keep up.

She now is working with other people living with chronic illnesses and sharing her journey.

You are a wonderful mom, extremely supportive, continue helping her to find great doctors and stay by her side lifting her up – she will make it because of you 💜

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Pillow fort fighters chronic illness "positivety only" online support group for young people:

thepillowfort.co.uk/PFC/u

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Thank you Djlr. I cannot believe it took 6 years when you have lupus yourself. I really can't. I love my daughter and we will get through this. Paed rheumatologist - 21 May and she specialises in lupus. It's hard because you just want to make things better for your kids. Thank you for your kind words. I'm glad I spoke to another mom.

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