Lupus And Overlapping Illnesses: For Hidden in... - LUPUS UK

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Lupus And Overlapping Illnesses

Jmiller623 profile image
45 Replies

For Hidden in regard to overlapping illnesses and CTD presentations. I really liked this figure that I also posted on FB. Such a good representation of what we’ve been discussing this last week.

sciencedirect.com/science/a...

45 Replies

This is fabbydoo - thanks! X

Ps I will have to design a similar configuration which puts Sjögren’s rather than Lupus centre stage though 😂

Jmiller623 profile image
Jmiller623 in reply to

There, I fixed it for you. 😂🤣🤣

Sjögrens
in reply to Jmiller623

Oooh thanks I’ll have to look on my laptop as HU comment images don’t show on my iPhone for some reason! X

Jmiller623 profile image
Jmiller623 in reply to

FYI. Images will show up on the website on your iPhone but won’t in the formal App. If you access HU through a safari browser, you can add images and tag people.

in reply to Jmiller623

Yes HU explained this to me too but for some reason it made no difference. I've even tried deleting the App but that didn't help. Oh well I've finally managed to find and download an image for your interest in replies using my laptop. It's not as nice and sharp an image as yours but it will have to do! x

Joaclp profile image
Joaclp in reply to Jmiller623

Thank you. We could each write our own versions of overlap autoimmune illness and symptoms. I just wrote PART of my experience of tenosynovitis, etc. to Wendy39,excluding the myriad systemic illness part. Yesterday's discussion was interesting. Kay Himm spoke of an ideal found with some experts, but many of us find that expertise hit or miss even in university research hospitals. There is often a need for greater humanity and an abiity to just listen. Why don't you use your medical expertise to mount a study of reported symptoms by patients and the relative flexibility of diagnostic trees? Or some such.

Jmiller623 profile image
Jmiller623 in reply to Joaclp

If I had the energy and attention capacity, I’d do a lot of things. I’d still be working as a physician. Sadly, mounting studies takes time, energy and funding. I worked a long time with lupus and I’m pooped. Time for others to do the work. I just need to find the same ears you are looking for as well. If I chose to develop a study, I couldn’t do it alone and the disabled are quickly shunned no matter how smart. I’ve reached out to countless researchers and only one ever wrote back. No one cares what I have to offer. Trust me. I’ve screamed off the tops of buildings. All I get is crickets.

in reply to Jmiller623

Ugh the waste seems criminal. But at least you can shout from your rooftop at us here and we will listen and love you for it!

Jmiller623 profile image
Jmiller623 in reply to

The waste is what depresses and saddens me most. That’s what makes me cry everytime. Not the pain, the blurry vision, rashes, the fatigue, nausea, insomnia…..

Literally the ONE thing that upsets me is just that. Having so much to offer and nowhere to utilize such gifts. It saddens and angers me to no end. I have tears in my eyes writing this.

Next month, I was asked to visit a Amish community and give a talk about lupus since they are so isolated. Attendance is suppose to be over 100 people so I’m SUPER EXCITED about things like this. My husband works with lupus technology companies as well and I give my input but never in a formal fashion and that angers me as well. I told him that I’d love to consult even for free. I try to push my nose in everywhere. Rejection is fine but no response is the worst.

in reply to Jmiller623

😪🤗🤗🤗🥰

in reply to Jmiller623

You probably are doing more good and helping more people than you’ll ever realise. It’s always those on the outskirts of society like the Amish communities will need what you have to offer and appreciate your contribution enormously just as we do here XX

Klutzy profile image
Klutzy in reply to Jmiller623

I did not realize you are unable to practice anymore. Yes I could imagine how depressing that may be. You still have so much to offer. It's just in a different capacity. Awesome about the Amish. They do need to help!

And you've been an enormous contributor with your knowledge, kindness and willingness to help others. I so wish many other doctors were like you. Thanks for starting the thread and the illustration!

JennaShi profile image
JennaShi in reply to Jmiller623

Hugs💜!

stillsdisease profile image
stillsdisease in reply to Jmiller623

Keep pushing!

maggielee profile image
maggielee in reply to Jmiller623

That's great news... Will be really interesting to see if Amish folk get a spread of autoimmune diseases including Lupus & Sjogrens...ml

stillsdisease profile image
stillsdisease in reply to Jmiller623

We all care 😃😃😃

in reply to Joaclp

You're such wonderful people to have on this online community! I've now found and dragged JMillar's alternative Sjogren's diagram for my own perusal. Iphone is too small and unwieldy for studying anything closely.

And I found yesterday's discussion very interesting too. On a weekly BBC radio 4 programme called Woman's Hour (a real BBC institution like The Archers!) an immunologist at London's Royal Free Hospital spoke about the fact that they are now setting up a UK research centre for autoimmune diseases with the focus on commonalites rather than on disease distinctions. I had a bounce in my step all day at the thought of this becoming a reality soon.

I'm not sure if it will work now I'm using my laptop but I'll try to locate and add a similar looking diagram I found online for the Scleroderma family as it confirms a lot about my own hunches about the personal agendas of my own university hospital doctors. I just messaged JMillar with an update too and to thank her for the unique help and support she's given me and many others here with her clinical expertise X

Joaclp profile image
Joaclp in reply to

Aw, you are sweet to me, but oh so applicable to Dr. Miller! I think I remember that you have a personal diagram of your ongoing journey. I envied the beautiful writing not to mention the rigor! Barnclown speaks of Venn diagrams. I keep thinking I need one but can't organize it. My brain won't go there without feeling angry and wronged by so many practicioners.

How wonderful to think of a study of commonalities! I had a now-retired rheumie in Los Angeles who was wonderfully sceptical about all the compartmentalization and even the somewhat new field of genetic typing and the development of biologics. It was the associated pomposity and pretensions to targeted specificity that he would poke holes in, not the idea of advancing knowledge.

in reply to Joaclp

Yes I did do this you're right! I didn't show it to my rheumy but it served its purpose by helping me to visualise my own health journey. An admin on the Scottish Scleroderma network suggested I do this because she was getting so fed up of my very long written rambles! 😀🤭

Klutzy profile image
Klutzy in reply to

Good idea. I am going to do something similar for my Rheumy appt and one for my neuro issues.

maggielee profile image
maggielee in reply to

Good suggestion, must give it a try to make a visual journey.... My A4 sheet of diseases, medication, etc. Is getting full. 😀

in reply to Jmiller623

Just for your interest - I found this on an academic paper about Scleroderma antibodies and highlighted mine

Scleroderma antibodies diagram
maggielee profile image
maggielee in reply to

Great !

KellyInTexas profile image
KellyInTexas

V diagram - very good! Permission to steal for the APS forum?

Jmiller623 profile image
Jmiller623 in reply to KellyInTexas

Absolutely Kelly!!! Reference for diagram is in link below.

KellyInTexas profile image
KellyInTexas in reply to Jmiller623

Thanks Jm. Will do tomorrow. ( on way to childhood friend’s father’s funeral. He made it to 91 and died of old fashioned old age! ( LB Parkinson’s/ dementia.)

Klutzy profile image
Klutzy in reply to KellyInTexas

Sorry about your friend’s father.

Jmiller623 profile image
Jmiller623 in reply to KellyInTexas

Sorry to for your loss. Hope his life was as fulfilling as it was long. ❤️xx

Joaclp profile image
Joaclp

It makes me sad to hear of your experience., J Miller You do give a lot here, from the perspective of your medical knowledge.

I know as a lay person, talking to the specialist I have waited forever to see, I feel as though I need to have mastered all of the medical knowledge related to my illness, and then to articulate my symptoms within that context! Whew! and this is with fatigue, brain fog, extreme pain, double vision, and difficulty writing with neuropathic hands.

I hope we both get the attention we need. I worked for 10 years after I had my first autoimmune diagnosis and almost collapsed into early retirement. Recently I was asked to do a limited project and I had a heart attack. You are young, how much more difficult it must be, ❤🦄🌸🦓

CecilyParsley profile image
CecilyParsley

Thank you so much for this. My brain is too foggy at the moment to take it all in but I did not know that Spleenamegaly was part of the condition. My spleen is so enlarged it is uncomfortable to bend down... blamed on obesity. Also I get infections monthly. UTI, cellulitis, nasal, ear, throat, chest, fungal infections of the skin, conjunctivitis. Never related to any form of autoimmunity. I will read it again after a few cups of tea and a shower xx

Klutzy profile image
Klutzy in reply to CecilyParsley

Those things must be tough for you especially to have them recurring.

CecilyParsley profile image
CecilyParsley in reply to Klutzy

I am completely fed up of myself. As soon as one infection ends a new one starts. I am at the stage now that I do not contact my GP unless I am desperate because otherwise I would be on permanent antibiotics.

Jmiller623 profile image
Jmiller623 in reply to CecilyParsley

Oh no CP! Splenomegaly is seen in a lot of things. It can be incredibly painful just like when the liver swells. It stretches the capsule that covers it. Has no one ever figured out why you have a big spleen?

CecilyParsley profile image
CecilyParsley in reply to Jmiller623

No, none has ever investigated. I kept complaining to my GP that it felt uncomfortable to bend over, she replied well Don’t then 🙄. It was only when I was getting a Doppler due to calf pain that a registrar was examining me. She pressed down on my abdomen and I jumped she said how long have you had Spleenamegaly I said I don’t know. She explained what it was but my GP said speak to the Rheumatologist, who said speak to your GP so I just live with it

Jmiller623 profile image
Jmiller623 in reply to CecilyParsley

CP. That’s not right at all!!! 🤬😡🤬😠😤

Ask your GP for a hematology referral. We got referrals for splenomegaly all the time. It should not be left alone and should be monitored. An initial measurement on imaging must be done. Above a certain size puts you at risk for laceration. It should be worked up even if all comes back OKAY.

CecilyParsley profile image
CecilyParsley in reply to Jmiller623

It is a very long story but in 2010 I saw a new Rheumatologist who decided I did not have Lupus at all but Bechets. He took me off the Hydroxychloroquine. I began to get serious night sweats, and feelings of breathlessness when my chest was clear. He sent me for a CT scan. He then called me and said he needed me to repeat the CT scan in a month. After that I got a call to say I had an urgent referral to Haematology because glands around my heart and lungs were significantly increased in size. I went along to the Haematology appointment and was shocked when she said she had met with the Oncologist and Radiographer and they were United in a diagnosis of low grade Lymphoma. In my absolute ignorance I said at least it is low grade. She went on to say that I needed biopsies to see how advanced it was but due to the Bechets and my obesity I would need an Intensive Care bed??? I got home and felt horrified when I googled it. I went to see my GP who said I probably had a life expectancy of 4 years but that she would make sure that I did not suffer. Over the next few weeks I made a will, made lists of bills and account numbers for my husband. I then went back to my GP and asked for a referral to the Lupus Unit. They confirmed SLE and put me back on Hydroxychloroquine. I had a further scan two months later and my lymph nodes had returned to normal size but my spleen was still enlarged. I was discharged from Haematology.

Jmiller623 profile image
Jmiller623 in reply to CecilyParsley

👏👏👏Thanks for sharing! I am in your boat (I feel like I’m in everyone’s friggin boat) with looking like I had lymphoma. I am so sorry they made you scare like that. Although my nodes are still big even on HCQ. They go down a little with IVIG. Almost like I’m hiding infections that my body can’t deal with unless I get other peoples antibodies.

I still find it interesting that your spleen is still enlarged. Have you ever had your EBV, CMV titers checked? Do you ever get low platelets? Sounds like they worked you up pretty good. Low grade lymphomas simmer for decades sometimes before they decide to show themselves. I am pretty positive that I’ll develop lymphoma at some point. HCQ just slows its roll.

CecilyParsley profile image
CecilyParsley in reply to Jmiller623

Honestly I don’t know if they have checked for those things I have to fight to get blood results. My GP says they are normal then when I get them and the lab has clearly marked those that are not normal, she says what I meant is they are normal for you 🙄. My platelets are always low, my red blood cells are always large, my ANA is always positive, my ds DNA is weakly positive or negative. The Haematologist did say in 2010 that I should have annual CT scans. I have not had one since. My GP says it is up to the Rheumatologist and each Rheumatologist has said there is no need?

Jmiller623 profile image
Jmiller623 in reply to CecilyParsley

Maybe it’s because I don’t have the full picture but that doesn’t sound right. I would push to make sure those CTs get done. I’m not sure how you’d go about making that happen but I agree that they should be monitored if not once a year, at least every 2 years. This seems neglectful to me IMO.

CecilyParsley profile image
CecilyParsley in reply to Jmiller623

It feels neglectful. I have been treated with indifference at best and neglect at worst. I do not know how to get better treatment. I have not even been seen for 18 months now despite my Neurologist and Respiratory Consultant writing and requesting that I be seen. It is shockingly poor treatment or lack of it 😞

Jmiller623 profile image
Jmiller623 in reply to CecilyParsley

😢I’m very sorry this is happening to you.

CecilyParsley profile image
CecilyParsley in reply to Jmiller623

Thank you so much for your kindness. It is much appreciated xx

Villagelife profile image
Villagelife

Very interesting reading thank you.

maggielee profile image
maggielee

Is sjogrens in terms of death, higher than lupus nephritis?ml

Abit behind on this, if that's the case as we can have many various illnesses to keep abreast of & I am working on bowels, etc. ml

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