Rant.

[rysem]

Hi All,

I am a 27 year old female who is currently (possibly) being diagnosed with lupus. My antibodies are + and my esr was up but has gone down again, when I was 17 I had optic nuritis and have unfortunately not regained all of my eyesight in my right eye, I have always been on the lookout for MS as this is a sign however now I am reading it can happen in LUPUS too. Has anyone experience Optic nuritis on this page too?

Since my teenage years I have had only 2 seizures which no reason was found, 1 collapse in the shower, optic nuritis, IBS after I had my first child, in general body pain, PCOS, severe flank pain in June... I went to the ED and after assessment the doctor told me that it was just because I had children... (extremely upsetting) when I had the severe flank pain in June my bloods showed as having highish WBC and blood in urine, however this was never investigated.

Does this sound like anyone elses road to diagnosis? It is extremely frustrating. Now I am just waiting on the next set of bloods so confirm the numbers are right.

I don't really know what I am looking for here, I have a million mixed emotions and am just wondering if this will severely change my life or if it will get worse/better. I'm studying to be a Nurse and am starting a new job next week to be a disability support worker... I need to be in good health.

Help. Even tell me your story so I don't feel like I am going crazy

[Hidden]

Rysem, rant! Please rant! This is a great place to do so with a lot of wonderful friends who understand!!

I, myself am still going through the ‘diagnosis stage.’ I’ve been being tested for almost 5 years now, to see what’s going on. The last, close to two years investigating for Lupus. Lupus, then Ankylosing Spondylitis, then back to Lupus, then Undifferentiated Connective Tissue Disease, and now they are thinking I may have Sjogrëns as well. So, Idk, does that make it Mixed Connective Tissue Disease or Overlap, or, I really don’t know.

There are others here who have been on a much longer roller coaster ride than I have. Others who’s markers have been strong enough to get a definitive diagnosis pretty quickly. I’m no expert, but my best advise is to be patient. Take a deep breath and be very patient. This could take awhile, or be quick enough. But, they are very careful before giving you a diagnosis for Lupus. In the meantime talk to your rheumatologist and to others (in here as well). Get a clear picture of what you should eat and what supplements to take, and what to avoid at all costs. If it is Lupus you can help your disease by making careful choices about what you allow in your body. Lupus can go into remission and you’ll want to keep it there for as long as you can.

In the meantime, welcome. We will laugh with you, we will cry with you, and we will pray for you. The one thing we won’t do is leave you. So welcome, you have a lot of instant friends here. I wish you the best. I hope that this isn’t what the doctors seem to think and that all will clear up and be well with you. 🙏 All my best. BK

[Hidden]

Hi and welcome although sorry you’ve had to find us all of course.

I have Sjögren’s rather than Lupus - although I was recently told by a rheumatologist with a special interest in Sjögren’s, that limited cutaneous Scleroderma, Lupus and RA are all overlapping, but Sjögren’s is my main disease along with hypothyroidism.

I think at your age and stage the most important thing is not so much which specific rheumatic or neurological disease you have - but which broad family it belongs to - systemic or neuro inflammatory or auto inflammatory. In other words is It rheumatic, neurological or perhaps on the Spondyloarthritis spectrum - or are these various autoimmune families overlapping perhaps?

I don’t know enough about the neurological manifestations of Lupus but I’ll give you a link to neuro Sjögren’s that I’ve found useful and which describes optic neuritis. The main neuro condition Sjögren’s causes for me is small fibre neuropathy and I think over 50% of sufferers get this as part of their Sjögren’s along with sicca and severe fatigue.

If it turns out that your symptoms all belong to the rheumatic diseases family then the sooner you can get a diagnosis the sooner hopefully you will be treated. I’m in Scotland and finding that rheumatology is very slow and I’m not getting far just now despite diagnosis - guessing this is because I’m very drug intolerant and the older I get with all this stuff the more they can blame on ageing wear and tear etc.

Some of my symptoms I’ve had since childhood including dryness - the neuro symptoms they haven’t found a full explanation for so the neurologist has tried to blame an overlying conversion disorder.

Meanwhile I’ve just discovered I have borderline diabetes which I think a far more likely cause for my neuro extras but no one has even seen me about this yet. The NHS is proving itself a very patriarchal institution and is also on it’s knees from decades of underfunding.

I’m guessing from some of the terms you use that you might be in the US or other so perhaps you at least have more choice about whom you see re specialists? If so you may want to try and find a rheumatologist with a special interest in CNS Lupus, Sjögren’s and Vasculitis. I don’t know how easy these specialists are to come by as this is rare but well worth doing your homework and trying to find the right specialist for you if possible. hopkinssjogrens.org/disease...

[stiff19]

I can’t answer your question but sending you best wishes and support in your time of need 🙏 rant away I do and we all understand , a long road with no immediate answers can be a lonely road but you will not be alone here you’ve come to the right place x

[CecilyParsley]

Bless you. Sadly your story is all too familiar. I was diagnosed with Lupus, APS, Pernicious Anaemia, Hypothyroidism ten years ago. Since then I have been told it is not Lupus but Bechets and Fibromyalgia, then Low Grade Lymphoma, then Lupus, APS and Fibromyalgia again, then UCTD, then Lupus and Bechets and APS, currently the Rheumatologist says there is nothing wrong with me except Fibromyalgia?? My GP phoned the Rheumatology helpline to get advice and was told that I have MCTD?? It is frustrating, demoralising and upsetting. This site is full of amazing people who will listen and help and advise if they can. I really hope that you get a good Rheumatologist who will make this journey easier for you. Good luck

[heatherevans28]

Hi,

Lupus is diagnosed by having 4 of the 11 criteria. This normally means physical symptoms with positive bloods but you can be diagnosed with one or the other. None of your symptoms are jumping out as classic lupus symptoms, which is positive but I appreciate also doesn’t give you an answer.

Which antibodies are you positive for? Your ESR, white blood cell count and slight blood in urine are all things which vary depending on multiple factors so aren’t usually a very good indicator of underlying issues unless they are extreme or persistent.

I’m sorry to read about your loss of eyesight. You mention MS as a possible cause and I wonder if tests have been done to rule this out? Or whether your doctors have any other ideas for a cause? With seizures and eyesight problems I would normally think doctors would be checking for neurological issues but obviously I don’t know your medical history.

Although lupus can affect your brain and eyesight in rare cases, my understanding so far has been that in most cases there will be other symptoms and organs affected first. For example many people with cns lupus have systemic symptoms and kidney damage first.

In terms of your future concerns, if it were lupus then there are loads of treatments which can be used if needed, and most patients have families, jobs etc.

I appreciate that a diagnosis can be a desirable thing but sometimes it’s really hard to work out a cause without definitive bloods or scans. The most important thing is really how you feel on a daily basis. If things get noticeably worse and are severely impacting your daily activities then really push with your doctors for further tests.

All the best xx