Help!! Am I losing my mind?

That should have read saw the dermatologist today. God my head's a shed lol

Hi Hayley, I haven't posted for a while on here but it is a very helpful site. My comment would be take a list of all your symptoms with you to the rheumatologist appointment, if necessary to leave with them. They may come up with other stuff but if you're not happy you should ask for a second opinion. Hope it goes well if there's something you don't understand ask the consultant to explain his rational. I have similar symptoms but they haven't decided if I have Lupus yet that's been 3 years. But symptoms are Lupus like ....

All the best

J

Hi Haleybabes

You are not going mad, just feels like it.

As you'd have noted.....yours is not an uncommon problem.

It can take years to be officially diagnosed and with a change of consultant or even it seems, a change in mood of same consultant, the diagnosis can be whipped from underneath you or altered!

It's not funny I know, not at all. And blood test results do not bear testament to how you feel. It's just not an exact science as yet. SLE has to meet certain criteria and too many consultants aren't willing to see the whole picture: you as you present.

So maybe if you don't agree with what he writes in the letter to you , find a new GP, and ask for another opinion and don't produce the previous rheumatologists letter. Hopefully your new GP will write a brief 'fresh' referral.

You'll need a new GP for treatment of cystitis too.....

Hugs, you must be feeling defeated and exhausted

PM

🐚

Hi hayleybabes

It certainly is possible to have lupus with negative bloods!. So sorry you had such a tough dermatology appointment. Hopefully your Rheumy one will be better and you get chance to show your rash photos. Just to prepare you, not all Rheumies believe in sero- negative Lupus so you might have to seek another opinion!. Fingers crossed you don't and you see a very open minded one. It can be a long tough road to diagnosis where persistence pays off. Let us know how you get on. X

My experience of dermatologists hasn't been encouraging either! They aren't interested unless it is skin cancer.

I was also referred for a rash, as query coeliac disease in the form of dermatitis herpetiformis. She was downright rude, refused to order a biopsy because I had no rash - of course I didn't, I had been avoiding the wheat that caused intense itching that reduced me to tears and stopped me sleeping! No-one had told me I needed to have the rash - since the diagnosis depends on finding the marker in NORMAL skin, not in the rash, it shouldn't have mattered. The nurse asked should she arrange another appointment - no, it wasn't anything serious... In a very nasty tone of voice.

hi, just read your post, I am in process of wanting tests done for lupus as I am certain I have it, I understand through research that it is very hard to get a diagnosis , many different tests are needed, it's finding the right doctors ect who will take the time to listen and send you in the right direction, blood tests alone is not enough, it's a very serious condition but kept checked and medication you can live with it so I have read, it's very frustrating when you know there is something wrong but you don't know what, good luck, am happy to talk about it with you more. Lorna.

Hi - hang in there you're not going mad! I've had five years of being wrongly diagnosed with RA, and then in January this year another rheumy said I might not have RA and definitely did not have a connective tissue disease - despite very high inflammatory markers and the fact that I was on steroids when he tested my blood. He was adamant beyond anything I've ever come across about this. When I timidly asked at the end if I could possibly have Scleroderma he said "NO - you do NOT have that!".

Then I moved house and was referred to a new rheumy in a new hospital. My ANA showed up positive for Scleroderma only five months after the overly assertive rheumy had dismissed it - and I was advised to have a lip biopsy which came back very positive for Sjogren's Syndrome - which my new rheumy feels is probably my primary connective tissue disease.

Re the rash - I have suffered similar on several occasions but the dermatologist told me it is Rosacea in my case. They do look very similar and I had a biopsy of rash on my neck that the dermatologist was convinced was Discoid Lupus. But it just came back for Eczema and some kind of autoimmune cells (IgM) which the next dermo felt was Rosacea. This skin disease usually responds very dramatically to sunlight too so your dismissive rheumy may have felt this was what yours was? But Rosacea is also very common in people with autoimmunity so isn't to be dismissed either.

So sorry you're going through this lupus would show in your blood even when you weren't having symptoms I would assume although the inflammation part would not be there stay rub down with sunblock 50 + face arms neck everywhere you have Exposed Skin wear a big hat umbrella whatever you need to in the meantime try to find a good rheumatologist that will listen to you and express your concerns have patience it can be very frustrating I know I've had lupus for 10 years I did not have to go through all that misdiagnosis they diagnosed it right away I was borderline it's kept at Bay with the medication but I still get sore joints here and there fatigue always and chest shoulder neck pains a lot I wish you the best to keep us updated soft hugz

HI. YOU ARE NOT GOING MAD. OVER THE YEARS I HAVE HAD BAD MEMORY, CAN'T THINK STRAIGHT, HAIR LOSS, ITCHING ETC. WHEN I WAS 27 SKIN SPECIALIST SAID IT WAS THYROID PROBLEM. DID NOT GET PROPER DIAGNOSIS UNTIL I WAS 50 WHEN I HAD A BIOPSY ON MY BACK - RESULT DISCOID LUPUS. ASK FOR A BIOPSY I WAS LUCKY SPECIALIST SUGGESTED IT. HOPE YOU FEEL A LITTLE BETTER SOON

Wow, I'm overwhelmed with everyone's caring responses. Thanks so much. I just really needed to get it off my chest. I've had so many differing symptoms for so long. When the b12 came back low I thought that was the cause but I apparently didn't have antibodies so was left after the first 6 injections, until the gastro I'd seen for chronic gastritis wrote to them telling them that in around 30% of cases of autoimmune b12, bloods are negative. But the regular jabs haven't made any difference. There's the absolute fatigue, memory, clumsiness, urinary probs, small joint swelling and pain/stiffness, gastro probs, hair loss, poor healing, pulsatile tinnitus that drives me crazy at night, low bp, chronic chest probs, palpitations making me dizzy, spider veins appearing everywhere on a daily basis, chillblains/probable reynauds, it's endless, and the only test that has shown anything was an inflammatory marker (esr) was high, once...whenever I have a "flare" I see the go, who orders bloods, but the appointment is always weeks after and things have improved.

The one thing about yesterday that sticks in my mind is he asked about the rash, I told him after 10 days I saw the gp as it wasn't clearing with Otc cream, she gave me tablets and it began to improve slowly. But he said "lupus rashes don't come and go in 10 days!" I never said it had, but he just said "it's of no consequence, it isn't lupus" but then never actually told me what the rash could have been. Since that first episode I've basically covered myself all summer, except for once and within 30 mins it was starting and bam, another flare started too!!

All this on top of degenerative disc disease. Back pain for years, no mri as was deemed non surgical, until the lovely gp overrode that and sent me for one. Two knackered discs with a third on the way...

Oh my goodness, what an essay, sorry...

Again, thanks for the ears (or eyes), this is a wonderful group

Stress is the worst isn't it? So hard to reduce when there is stuff to do! But what you can't control, be it the house prep....then try and ignore.

Simple question but I actually don't know the answer 😌...everyone else here does! You can 'private message' people which would include Paul Howard the administrator. I guess click 'help' from the home page and see.

Sorry about that....😊😊.

Pain mx is the key to mx this disease...its debilitating to have to push through it constantly. For me, it's the worst part and I do take small amounts of narcotics. I don't fear addiction, it's not possible when your body needs it, your mind doesn't feel the effects other than pain relief. Granted yes over time, the dose has to be adjusted but only minimally if combined with other measures.

Hope your flare is a minor, brief one 😳.

Hugs

PM

🌻

So my rheumy appt is next Wednesday and I'm getting really nervous. I'm scared that I'm going to be fobbed off due to my negative bloodwork. I struggle to stick up for myself and I need to express to them how poorly I feel...any advice? saw pain management last week, I'm due to have spinal injections for the degenerative discs so at least that's getting somewhere...

So, had my rheumy appointment on Wednesday, not sure what the score is still. He said negative bloods rules out lupus and anything rheumatic but I defo have soft tissue tenderness, joint discomfort etc, but then said it may well be spondyloarthropathy, which I believe Is a rheumatic condition... he said the antigen test I'd had previously was negative but that isn't necessarily a problem when diagnosed with spondyloarthropathy... he's going to have a case meeting about me, and even though I was a rubbish advocate for myself verbally, I did take a long list (lol) and gave it to him to look over...he's running more bloods. Gp is cross though as my urine sample was full of nitrites and the next day I only just avoided an admission to hospital with an acute UTI. He could have prescribed me something to treat it earlier... still, at least the guy believes there's something, even if it's not what I believed it was. Funnily enough, an Mri I Had done on my back at 18 showed some possible signs of ankylosing spondylitis but was left...

Thanks for reading, like to get it off my chest here instead of my hubby, he deals with enough...

Hi. I too recently was dismissed within 5 minutes by a rheumatologist. i have lots of wierd things, last coupke of week my hands and feet are really stiff and achy. neck ache. then last Tuesday i woke in the night with painful glands in one side of my throat/neck. My neck glands are almost permanently swollen, but not usually painful. theyve been sore for almost a week now felt really bad when i got upnthis morning too. my bloods wee negative ANA but positive anti DS DNA. i sympathise with you. i think there are some rheumatologists out there who dont understand the disease really. i would go back to your gp and ask for a second opinion.