Diagnosis

[Treesl]

I was wondering if I have Lupus and hoping some of you kind people might be able to help me. I'm going to do a really brief summary of my health life, that might be relevant.

Late 20's Both knees suddenly stopped bending, clear up on its own. Pain in groin area, continued for 20 years. Weird headaches and pains.

30's Night sweats, tingling in arms. burning feet. Nasal drip. Exhaustion and depression.

40's Tremor, aches and pains, burning, exhaustion and depression. Nasal drip. An episode of joint swelling pain in hands clears on its own. Optic neuritis referred to consultant neurologist cleared with steroids. Concerned I have MS. Feeling better for a couple of years before start feeling weird again. A one off episode of purple purpura on back of legs, cleared up on its own.

50's Back to neurologist, new internal tremor, burning pains, exhaustion, depression, nasal drip, dry eyes. Hyperreflexia in left foot. New course of steroids improves fatigue but neurological still continue. Now swelling and pain in joints, no joint damage decide to see Rheum in case arthritis. Rheum takes bloods only ANA positive (always been negative before) . When I look up Lupus everything seems to start making sense to me but Rheum consultant says I don't have symptoms and was quite rude when I raised it so didn't have a chance to discuss these other weird symptoms that might be relevant.

Very occasionally bridge and end of nose will just go bright red. Clears up after a couple of hours.

About twice a year a small circle of skin just falls off the outside of my nose same spot doesn't hurt.

Hands and arms can get itchy and when I scratch the skin just comes off.

Does anybody have any ideas of what these could be?

I suppose I'm quite lucky that everything is quite mild. Currently I just have days when a wave of fatigue and depression will come over me with no reason (though I'm scared the one where it happens everyday will come back). Turmeric and iron seem to be helping with my joint pain and Vit D seems to help with fatigue.

What should I do? Should I go back to Rheum? See another? Go back to neurologist? Not worry about it? Very confused at the moment.

Thanks

[Spanielmadlady]

My poor love.... personally I'd ask for a 2nd opinion from a different rheumatologist.id also ask for full blood work inc b12 and get urine tested.it is unfortunately a long tiring rd to diagnosis for me it took 5yrs so you've got to keep chirping away at your gp.you can go anywhere for another opinion so might be worth considering centres of excellence.x

[Spanielmadlady]

I suggest urine as that's how my lupus was confirmed.urine test showed large amounts of blood you cant see .I was referred to a kidney specialist and a biopsy confirmed class 5 lupus nephritis.fatigue is a major part of our illness and many symptoms flit about the body and come and go sometime lasting hrs sometimes days.i hope you get some help soon xx

[Treesl in reply to Spanielmadlady]

Thank you, I had a urine test at the GP fairly recently so I think that's all ok at the moment. I'll have a look out for a centre of excellence. I assume there will be one somewhere in London.

[Spanielmadlady in reply to Treesl]

There is one at guys and st thomas...the louise Coote lupus unit

[KayHimm]

Treesl - You have had a lot of scary and concerning symptoms. You sound like someone in the predominantly neurological category who will be very hard to diagnose. I just went through this with the daughter of my cousin who has lupus. The daughter had headaches and abnormal MRI five years ago. Like you, developed optic neuritis, then worsening MRI. She had tests for lupus and finally spinal tap.

I am telling you this help you to see it can take a long time to diagnose these things.

If I were in your position, I think I would go the neurology route first. Neurologists know neuro lupus well and can order the appropriate scans if necessary. Tell him you want a new rheumatologist if he wants a consultation.

Ask the doctors specifically how they explain what has been going on with you. They may be able to completely. But they should give it a shot. You have been put on steroids so they must think something inflammatory is going on.

Best of luck.

K

[Treesl in reply to KayHimm]

Thanks, that's really interesting advice. My neurologist has been very good but we haven't been able to work out what's wrong. I hadn't mentioned the joint swelling as it wasn't current when I was seeing him. He said I could come back anytime, so maybe I should do that with this new information and the now positive ANA test.

[KayHimm in reply to Treesl]

Definitely. He would want to know this information and see how you have evolved. Optic neuritis is apparently very rare in lupus, so going back to a rheumatologist may not help much unless you had other symptoms.

Good luck with this. Keep in touch with us!

XK

[Spanielmadlady]

Tell them absolutely everything ,every ache ,pain, sensation or symptom. You might not think its important but they will know.I dont get joint swelling but I get joint pain....eventually my rheumatologist put me on pregabalin and admitted only 20% get just pain.you can see them all you need to have a multi disciplinary team who will communicate between themselves.i have my gp,a chest specialist, an endocrinologist, a rheumatologist and a kidney specialist. Can be abit of a drain when appointments come in close together but that's just how it goes sometimes Xx

[Treesl in reply to Spanielmadlady]

A multi disciplinary team sounds scary. I get anxious going to the doctors! I'd rather pretend nothing is wrong. I have recently been writing down my symptoms so I don't forget to mention them however, last time I forgot to get the list out They were probably a little light on details though, so next time, I'll put in everything, thanks.

[Spanielmadlady]

It is abit scary but there is so much help available if you embrace it.i also had help from occupational therapy for my hands and complimentary therapy from my local hospice all through my mdt.ive gone to 3 different hospitals in 5 days before now .im fortunate that 2 of mine know each other and work in the same hospital and they do communicate with each other and will have conferences if necessary xx

[Spanielmadlady]

My rheumatologist always asked me i f I got mouth ulcers... I simply didnt get them so i said no. It wasnt until i read a book I'd got that that I found out you can get them up your nose....guess where I'd been getting them all along but I'd never been asked about my nose.so it's worth writing down every little thing a good rheumatologist will listen to you go through it all xx

[Treesl in reply to Spanielmadlady]

True once I know what's wrong and get some help it may feel different. Funny you should mention the nose. Inside one nostril I've got a spot that scabs over, had it for years. Is that an ulcer?

[Spanielmadlady in reply to Treesl]

I dont know whether that's the actual name for it.i used to get what I would describe as septic spots up my nose that took ages to heal then would reappear and were really painful.touch wood I havent had any for quite sometime now .I'm sure it will.acceptance also helps enormously and there are people like rheumatology nurses etc who are fantastic to talk to and will take the time to listen to you.mine was lovely whenever I went shed ask me how I was and I'd say the usual...ok.then shed say now tell me how you really are. Keep smiling xx

[Treesl]

Many thanks to you both for taking the time to reply. It's really helped with my decisions about what to do next. I'll let you know what happens next.

[CecilyParsley]

I agree with Kay I would definitely go back to your neurologist first and make a symptom diary so he can see your symptoms and how long they last. How is your B12? Do you have gut issues? I hope you get the help that you need xx

[Treesl in reply to CecilyParsley]

Yes a symptom diary is a good idea. I've had my B12 checked, I was really hoping it would be that. Thanks.

[CecilyParsley in reply to Treesl]

My diagnosis went quicker when I kept a symptom diary and photos of everything from rashes to swollen joints to ulcers. Good luck xx

[Hidden]

Hi am so sorry your so unwell. If you can get the rheumatologist to sign off on your case and discharge you as he doesn’t sound helpful. then go back to your doctors. They can then recommend a second one. As they won’t get you a second opinion whilst your seeing another. I am Going through a similar issue With mine he’s a swine. 🤣. I am waiting for a diagnosis of lupus. Do you have a rash some people do. How long have your eyes been dry. Look up scleroderma and Sjögrens as well as lupus. A lot of the time we are fobbed off. You mentioned ANA how many times has it been positive. Get all your medical records so you can read through everything it’s amazing what you will find as they don’t always tell you everything. Keep a symptoms diary and take photos of any rashes. Sometimes when symptoms are mild your fobbed off it’s only when your at critical level and any fool can see what’s wrong that they may do something. If steroids work that can indicate an auto immune diseases it’s what a neurologist says to me last year. Am so sorry your getting nowhere it takes a long time as they are just so slow but if you get the right medical professional consultant they may be quicker to diagnose. I hope you get sorted out as I know it’s very frustrating let us all know how you get on and have a lovely day. J.

[Treesl in reply to Hidden]

Thanks for the tips. Glad it's not just me that seems to have trouble with doctors. I've only had one positive ANA and its been tested quite a few times. I'm coping ok, just as you say frustrated with the whole thing.

[KatieRL]

Like so many others. my Lupus diagnosis took nearly 4yrs. I was pushed from one doctor to another till I went to an acupuncturist who told me he could help the awful joint pains (which he did!) but not the underlying condition which was an autoimmune illness. After that it didn’t take that long to find the right Rheumy team. Sometimes we have to kiss a lot of frogs before we find our prince! I do wish you well xxx

[Treesl in reply to KatieRL]

I love that "a lot of frogs" made me laugh.