Hi, it’s been a while but I’m still getting on with it , just out of hospital yet again with pericarditis again! I’m now on anti inflammatory medication and another 2 weeks of antibiotics for a kleibsom infection they haven’t cleared since December, I can’t remember the spelling but it’s a nasty bug. Consultants and I’ve seen a few have all said connective tissue is the cause but now they have told the rheumatologist I’m seeing at the end of March for my second visit that the issue is Serositis that’s causing it’s so they are saying sle lupus or but because my ANA is negative the rheumatologist wouldn’t accept it so let’s see what happens.. unfortunately in my late 20’. my doctor suspected an autoimmune disease and then in my 40’s lupus was mentioned again but ignored by a rheumatologist and unfortunately it’s now caused severe spinal issues a venous bleed on the brain osteoporosis (early onset) and now this.
Hi everyone : Hi, it’s been a while but... - Lung Conditions C...
Hi everyone
That sounds truly awful and I hope something can be sorted out soon. SLE (lupus) can be a nasty illness. My daughter in law has it and suffered a flare up recently.
Thinking of you. Xxx❤️
Thanks hun, I feel for your daughter unfortunately both my daughters suffer like I did when i was younger too so I really hope they don’t go through these years of suffering like I have.
Wendy xx
Hi Wendy, I feel for your daughters and hope they’ll be well cared for. My daughter in law has had lupus for some years and sees a rheumatologist on a regular basis. Take care.
Carole xxx
Crikey moses you've been through the mill and back. Typical doctors missing things with their selective hearing 🙄. You sound quite upbeat and I take my hat off to you chook. Hope infections get under control for you and there are brighter days ahead 🤞😉
Spring and warmer weather I hope, although I have to avoid the sun it’s still nice to feel the warmth.
Wendy xx
Get well soon xx
Your doctors seem to have a very hit or miss attitude to finding what's wrong with you. Unfortunately more miss than hit. It's not as if they are trying to win a goldfish at the funfair. I hope they find the target soon; you've waited long enough. Bless you- hope you won't have to wait much longer. xxx
What a cocktail you have Wendy , including (Lupus) It was suspected I had that once, but thank goodness that was wrong. Hope you get sorted soon, they you can enjoy spring. x
I’m blame the consultants but they have said all along they believe the cause is connective tissue so I’m just really hoping they are right about this.
Take care
Wendy xx
I hope you have a connective tissue problem well away from lupus, Consultants usually are right.
Hope you get sorted soon Wendy xx
Thanks Ern
It’s gone on so long with numerous hospital admissions, the full respiratory team have been involved including cardiologists and rheumatologist but it’s been difficult because my bloods say no but everything else says yes but now it’s got to the point of no return where the rheumatologist can’t ignore anymore.
Take care
Wendy xx
I had some of that with my bladder cancer, told me was superficial, I was so relieved, then months later it was high grade and they wanted to take my bladder, I refused because of the danger so numerous cystoscopy's - numerous BCG infusions, then when thing looked so black, last biopsy showed low grade. Good but not sure what happens now.
I think you are having the same Wendy - Lots of hospital admissions yet you still don't know what you have. I really hope you get sorted, horrible being in no mans lands.
Look after yourself Wendy xx
They thought it was meselethioma not sure if I’ve spelt that right but basically cancer of the pleura caused by asbestos but because everything else is showing negative for cancer they said it couldn’t be and didn’t attempt a biopsy because of the risk. They still keep saying they can’t say for definite it isn’t cancer but they believe it’s not!Amazing how they backtrack on themselves.
Take care
Wendy xx
It does not seem fair, Drs are supposed to tell you what you have - If you have ' mesothelioma' or not you would think they would have after investigations when you have it or not.
I think if they "don't believe it is cancer but can't say for definite " I maybe would take heart in that - I was taken off BCG treatment because they believed I 'might have a lung tumour ' because I had a 6mm nodule they though was secondary to my bladder cancer,
It was not as confirmed by the lung doctors -
Then after 3 years in a dark place. out of the blue it's now low grade BC .
It could change but I am taking heart from that and to be honest If your doctors don't think you have " mesothelioma" (cancer) I would try and be heartened by that,
Look after yourself Wendy -and try not to worry if they think you DON'T have it.
Luckily I take everyday now as a blessing as I’m very lucky to still be here. I will take whatever is thrown at me, just hope rheumatologist can sort this mess out and really hoping if it is SLE he can help before more damage is done, thanks Ern and to everyone who’s been here for me, don’t know what I would do without your support.
Take care
Wendy xx
That support will always be there from us all Wendy xx 😃
Xx
What alot you have had to cope with Numptybrain I hope things get sorted for you and you can get on the right treatment x
Oh Wendy what a catalogue of problems, especially those missed by the medics. Fingers crossed they get you sorted, autoimmune illnesses are terrible and if you get one you usually get lots more to join the party. My hubby has had bronchiectasis for over 75 years (from childhood) but 10 years ago RA kicked in which led to Rheumatoid Vasculitis which started peripheral neuropathy and at the same time diagnosed with heart failure. I really sympathise with you and hope the clinical care you get in the future is a real improvement and that the medics listen to you. No-one knows your body and how you're feeling better than you! Joy xx
Very true, I was sadly misdiagnosed in my 20’s with early onset osteoarthritis then in my 40’ s with fibromyalgia so they have missed the signs. I hope your husband got some relief eventually, it’s so sad that even now people do still get missed when it comes to autoimmune but unfortunately with sle it’s very rare to have seronegative sle.
Thank you
Wendy xx
Hi everyone I’m new to this community. I’m wondering if anyone is having slight breathing problems when having a cold after having PE twice.
Hi everyone
