Recent rheumatology appointment

[Leecylou]

Hi

I've been suffering for years with painful joints and muscles extreme tiredness never felt well. Had blood tests in 2003 which were positive for ANA and dsDNA was told wouldn't be lupus as didn't have a facial rash. Was diagnosed with chronic cervical radiculopathy and fibromyalgia. A few years on had to have a hysterectomy followed by ovary removal in my late thirties. Still had positive ANA and dsDNA then had was hospitalised for almost a week with what they originally thought was chicken pox and organ failure responded to steroids more bloods still positive but told not likely to be lupus. Next year I had pneumonia following year dreadful stomach pains told it was likely to be a hernia. Doctor sent me to gynaecologist after scan showed an ovary asked if I'd really had one removed quite sure. To date still have lump had tests for diverticulitis as my mum has this not this so now waiting for ct scan results. In the meantime last Christmas had major chest pains and was breathless took a double dose of dicloflenic for a few days felt better. Had a routine check in January which had me having ECG and chest X-rays was told not to go on holiday the following week given a gtn spray and told to be very careful. Went on holiday back a week rushed appointment with a cardiologist who thought I had myopericaditis and asked if I had heard of lupus as could be the cause. After being rushed to hospital in an ambulance with an uncontrolled angina episode had ct angiogram and echocardiogram was diagnosed with pericarditis. 4 months later got a referral to the lupus clinic at Guys Hospital have had many more tests as lungs not working too well and have had another attack of pericarditis At the lupus clinic I've been told it's probable lupus and was seen by professor D'Cruz and am now on hydroxychloroquine as well as all the heart medication and anti inflammatories. I'm also under professor Rinaldi for heart investigations and waiting for another MRI stress test which I'm not looking forward too. Last month my bloods were positive for d dimer but ct scan on lungs were clear. When I saw prof D'Cruz he took one look at the rash on my legs and said it was a venous flare. The strange thing is that since I've been on all my tablets and as I now have an autoimmune thyroid problem my bloods are now negative??? Is this usual ? I'm hoping that I will start to feel better soon the exhaustion is better since I started the 200mg of hydroxychloroquine daily but I'm still very breathless and struggling with my mobility so hoping that this will improve soon. The treatment and the way you are treated at Guys is second to none my local hospital had an 18 month waiting list just for an appointment. I'm due back in November for a follow up and back at the cardiology department after my scan

Hope everyone has enjoyed their weekend and not suffering too much xx

[Barnclown]

Just want to say congrats....seems to me the system really has missed connecting the dots in your case...how many years? 12 years just to get into provisional diagnosis & initial treatment...and that long despite the clearly multisystem character of your issues. Well, I think your description of all that is great. And I hope you'll continue to let us know how you get on.

I'm also sero neg, but various aspects of my bloods are consistently clear enough disease indicators to mean that I'm now on a fairly effective treatment plan (oral systemic meds: hydroxy + myco + amitrip + pred tapers) which has taken 4 years to evolve since what has turned out to be my infant onset lupus was finally (re) diagnosed 4 years ago in my late 50s. So, my feeling is that, up to a point, you're just at the v beginning of the trial & error process of seeing which lupus meds etc are therapeutic & in what way. This means you'll experience various symptoms etc, and flares, which will all be monitored, with other meds prescribed as your Drs figure out how you & your version of immune dysfunction tick etc. meanwhile, keep close to your GP & your other clinics...and don't hesitate to ring rheumatology if you or your other Drs think you need to be seen sooner...or at least to receive more guidance on the phone or by letter

Hope that makes sense. Am sure you'll get some really clear replies...but at least this gives you something

Am wishing you all the v best🍀🌻

[johare]

Hi, firstly would like to say Dr D Cruz is great, I have endless faith in the man. Bloods do change. My thyroid has gone up and down for years, now on meds for it. I'm also under a cardiologist and neurologist via Dr D Cruz much more settled now due to the consistency in their care. You have had a long hard road, but trust him, tell him everything no matter how small. I have had stopped saying things for fear of hyperchrondria, but he picks up on the smallest things. Good luck

[puffyface]

I totally trust him too. He is very thorough. Actually, sitting writing a list of things to talk to him about tomorrow because I know he needs to know it all. It feels like being a hypochondriac, but when dealing with thyroid and lupus issues, it absolutely isn't and its important that he knows all of your symptoms to be able to help. I haven't had my bloods done since starting Plaquenil about 6 weeks ago, so will see whether they change.

Am so happy for you to be moving in the right direction after years of not being diagnosed. I'm sure they will have things under control soon.

x

[Leecylou]

Thank you all. I know being part diagnosed is just the start. I've always bounced back within a week or so and this has been long haul since January and whilst I'm not bed ridden as I was throughout February and have gradually gone back to work part time it is a struggle and whilst I'm able to work I am. Some days are harder than others and I try and work alternate days so I can rest in between. Hope all goes well with your appointment puffyface I shall be thinking of you

Johare I was diagnosed with an under active thyroid last summer and I do think this was probably the start of when things went downhill and I think the thyroid autoimmune followed by pericarditis was more than my system could manage. My youngest daughter was diagnosed with an under active thyroid at 14 and has now tested positive with ana. I'm going to try and get her seen at Guys too.

Barnclown thank you for your advice from speaking to my mum I was always unwell as a small child and in my early teens had dreadful migraines, cold sores nasal sores what's now know as many food intolerances and suffered with anemia and allergic reactions to wasp and insect bites so wouldn't be surprised if it went undiagnosed from then. I'm very lucky in that my GP is very supportive and my mums next door neighbor is a GP from previous surgery she also has an autoimmune disease and is monitored at Guys she is also very good with advice and is treating my youngest daughter.

Well good night ladies and thank you. Wishing you all a good week

Leecylou x

[Barnclown in reply to Leecylou]

good thinking, leecylou!

mothers can make all the dif during this diagnostic process...yours & mine certainly have come up trumps for us...i was just discussing this with Daisy-flower83 in another thread yesterday.

and GPs: yikes, what a diff a good one can make...the GP that has helped me most in my practice isn't even my "official" GP, but i stick to her like a limpet...she has shown great commitment & patience, lending crucial consistency & muscle power e.g. driving unusual referrals through etc etc throughout the past 10 years as my condition worsened generally to the extent where i was finally (re) diagnosed 4 years ago! and now, my surgery has the policy that 'complex' patients can have as many 20 min (double normal time) appts as they want...my good GP said to me last time: it's not your fault you have so many conditions you're managing constantly.

thanks again for posting and getting this v interesting & helpful discusion going: I've learned important stuff thanks to you

take care...please keep us up to date

xo

[Leecylou in reply to Barnclown]

Hi Barnclown

Hope you've had a good day I've had an exhausting day at work so glad I'm off tomorrow. My mum is so supportive she's comes to London with me has helped me financially while I was off work for several months earlier in the year and helps with my daughters and grand children with the running around with them that I use to do when I was able too. I'm glad you have a good GP at my surgery and my daughters your appointment is for how long it takes. In January when I was at the beginning of this episode of being unwell I was in the surgery either with the dr or the nurse for over 2 hours before they felt I was stable enough and not having a heart attack or had a blood clot before they would let me leave. I'm so grateful for having a very good surgery (it helps living in a village) we'll take care and have a good evening I'm off to bed

Leecy xx

[Barnclown in reply to Leecylou]

You're got a wonderfully supportive set of relationships going: a vvv beautiful thing. And I feel so happy knowing this is al there for you, especially during really tough passages. Take care, and good night xo