pre lupus

[stiff19]

here I pose an interesting question. I currently have suspected myasthenia (relevant to this or not and was also under suspicion of melkerson Rosenthal which from understanding can be pre autoimmune).Anyhow I have also had lupus as a possibility but nit in markers of bloods but fit into the criteria 11. I wonder if im in any sort of pre lupus state or just possibly one of the few who have it and not in bloods. I pose my symptoms as possibly pre lupus as I when I look back at past, I have encountered big fitting symptoms at times of stress, real stress. I am currently under a lot of stress and the symptoms return the inflammation the skin and the fatigue. I am always trying to keep stress under control as much as life allows but face the fact that my life is full of it and I either keep it in control or it takes over. so is this just stress I wonder or a pre lupus kind of thing hence why I always believed I should have been followed and wonder if being taken off hydroxychloroquine given for palindromic rheumatism? was the reason I got much worse, also that along this is where I developed myasthenia (or not) or the symptoms of,.stress most definitely impacts whatever ails either of us though im definitely certain of that but im surprised by how.

My daughter was seen at another hospital for those who know my posts and is awaiting other tests, more mri and bloods and then we will be contacted again. im pretty sure we do not advocate ourselves well and the questioning you'd expect is not forthcoming to answer so I never feel they have a full picture but am happy she is being looked into and they are looking to diagnose, wasn't happy that we went to gp for her for something unrelated problem? and she was looking at screen and said given thats pretty serious I think we will give you ........ to try as you cant take ....... given ? we asked what results were there from tests and she said we need to wait for further tests and speak to paediatrician but I guess they suspect something then . I am still trying to push for earlier appointment to see neuro ophthalmologist and dr said to ask to be referred elsewhere then receptionist said not that easy and you may be rejected 🤷‍♀️ so all still ongoing.

[smeackles]

Obviously earlier diagnosis the better. I do hope diagnosis and management of symptoms is imminent for you both. I always say you do have to fight your corner with the NHS, you are a number and you have to shout from the roof tops when something isn't right and they're not listening.

I wondered about this myself - having Lupus or the chromosome mutation sitting there rumbling until it gets triggered.

Looking back I can see my daughter in her youth had many symptons that separately could and were explained away. A teenager complaining knees or ankles hurt, always didn't like bright light (inside and out) joked about her being a vampire. Slept alot and still always tired. Stomach problems and anxiety and overwhelmed by things most people would handle.

In hindsight if I knew anything of Lupus back over the years I might have had it at the back of my mind. Hindsight would be a wonderful thing if it didn't happen after the fact - ironic.

I asked a consultant at diagnosis if it is something you always have and can rumble away until it gets kicked in to action by a trigger and they said absolutely.

x

[stiff19 in reply to smeackles]

thankyou for reply. yes its hard to get a diagnosis but just things checked. lupus covers so much too in way of symptoms so its very hard to distinguish but I suspect thats where a good rheumatologist comes into it or gp for that matter. with my daughters hyper mobility and joint tendon bone findings listed with all else and aggravated by huge stress I still would think she fits heds more but we are waiting. I also would fit eds but also fitting to lupus just bloods dont so I need to see a rheumatologist or neurologist to figure it all out but so far on nhs its been a case of its not in your bloods so fibromyalgia and its really not enough. suspected mg so yes possible or aneurysm was suggested so possible eds link or 🤷‍♀️ I just need joints dotted, there's no referrals to be had , I need kidney check, gastro, heart all of which uninvestigated symptoms and etc. interesting what the consultant said. in hindsight ive never felt 100 per cent even as a kid and ive seen I notice now little thongs with daughter leading to now. lets hope we get somewhere, I feel like I need to start fresh and have proper history taken. whatever it may be we just need to get some answers now ,too long has passed and more damage done so they need to step in.

thankyou for the reply 🙏 and best wishes x

[smeackles in reply to stiff19]

Most definitely - answers are needed. It pains me so much that permanent damage can be occuring whilst either waiting on diagnosis or the long long road to finding the right level of meds to manage things.

It was by luck for my daughter that after being diagnosed with rosacea and impetigo and getting worse, a Duty GP flagged up the possibility of Lupus and a dermatologist at the practice agreed wholeheartedly and got her in hospital to be checked straightaway. It still took several months and many many tests before getting the diagnosis - but I understand from this forum that was very quick for diagnosis. The only upside to this on our part I guess.

A start over and full assessment sounds like a really sensible and good idea. I do hope you get some answers really soon. The waiting and suspecting is almost the worst.

x

[stiff19 in reply to smeackles]

I am so pleased for your daughter and thats the way it should be but then I guess she had bloods to suggest.? I think when bloods do not match then there needs to be further investigation not just simply discharge and cause people to chase and rerefers and history gaps , not to mention progression for many and considering stress is a big deal to many health conditions its counterproductive and damaging. I think many of us dont have the correct gp to start with , the care thats needed. we followed doctors advice at walk in hospital to see rheumatology but then from paediatrics told all ok nothing in bloods to now later much damage and as looking at bigger picture its just lengthy waits. 6 years is too long for me with mine though , im past frustrated and just didnt have the strength to fight on. but I shall proceed and you are right, its heart wrenching watching others in same position especially as many here over years were finally diagnosed so yes we know our bodies, but many of us are now fighting the fight in awful nhs conditions with it struggling and no specialists to be seen.

so pleased to hear a good outcome, it gives hope to others just sorry for the diagnosis at all for your daughter and hope treatments work out and wish you both the best, I know its hard seeing daughter unwell I cant bear it but so pleased she has been diagnosed to receive treatment 🙏 take care both x

[smeackles in reply to stiff19]

Thank you for your kind words - very grateful of diagnosis for certain - just struggling with the time it takes for finding the right balance of the right meds, currently still running rife whilst on a cocktail of medications with long term permanent damage happening - but would be worse if not on the radar officially. Yes the bloods did concur for her which makes it easier. The human body is an insanely complex thing and no one persons results will tick all the right boxes. If only they did and there was a textbook answer to us all. 6 years is a scary long time to be doing battle - do understand getting tired of the fight. You shouldn't have to - but we do.

Wishing you so much luck for getting there to be able to handle and manage all your symptoms. xxx

[stiff19 in reply to smeackles]

thankyou and yes I guess that takes time too hopefully the correct medication will help settle things 🙏 you are right of course and just wish more medics had the same correct mindset then sufferings would be eased . very kind of you here's hoping 🤞xx