generally fed up

[Greenmil3]

bern to see prof D’Cruz at London Bridge as it looked likely I had sjrogens. He did his usual full checks thought dry lios dry eyes etc was likely to be APS but sent for blood test and now been referred as no sjrogens but high Gamma GT and high reactive c protein. Then on top of that had follow up lung CT and that took 30 mins when normally 5 minutes and lots of questions then do you have a follow up booked which I do on Wednesday. On top of all that been in constant pain for three days and taking so much pregablin and codeine just to get some sleep. Sorry I know this isn’t festive but have just been feeling so low.

[HollyHeski Administrator]

It all sounds overwhelming for you, did he eliminate sjogrens?I would write down my notes, questions and go back at follow up appointment with all this.

Don't give up, follow your instincts and listen to your body.

[Greenmil3 in reply to HollyHeski]

Holly thanks for that just slightly worried about lungs and liver will post updates when I know more prof D’Cruz did all the blood work soon markers for sjrogens .

[lupus-support1 Administrator]

Anyone would feel as you do. You are in the best hands with Prof David D’Cruz.

With good wishes,

Ros

[WendyWoo50]

Hi Green,

We can’t act all the time and while we do our best to be cheerful and not dampen everyone’s spirits, we can be ourselves here and share our thoughts and feelings.

Never apologise for having a moan on here, we have a lot to put up with, better to get it off your chest.

The big consultants are busy and sometimes don’t or can’t offer the aftercare they would wish to, following a diagnosis. So please turn to us for support. We are not medical but we do know how it feels, can share our experiences and tell you what we did (in case you want to try similar).

It’s about balance of work, rest and play. Yes we must keep going and moving, drinking plenty of water, eating well and very important get plenty of rest. PACE YOURSELF

Lots of love. And remember we understand so talk to us 💋 x

[MaryF Administrator]

Hi when you get a quiet moment, do write out your medical history in bullet points and current symptoms, also add in relatives with similar, it helps you get more out of your appointment, I do this for myself and other relatives. It is always good to see fully, what your levels are of D, B12, Folate, Ferritin and Thyroid, as any of these not being at the right levels make things a lot worse. MaryF

[GinaD]

My angst before finally getting an APS diagnosis and treatment was similar but not as intense as yours -due to my symptoms being not as extreme. Patience can be hard, if not impossible, in your situation. But do try and channel your energy into that list Mary suggested you craft. Take deep breaths. And know that through this site you have friends cheering you on across this planet. Let us know how things progress -- we hope on the up side, but up or down we are all here to support each other.

[kt11]

I feel for you, sending hugs x

[LindaMorrell]

be kind to yourself as much as possible. All these lovely people who understand are right behind supporting you. Good luck. Keep us all posted on your progress. All the best.

Linda Qld Australia

Just to make you smile.

First time I was shown all the white lesions in my brain, I said to the extremely clever lovely neurologist.

“ and here is me thinking I am stupid (brain fog) because I am blonde”. Specialist calmly said, “ honestly your hair colour has nothing to do with it at all”. Bless him he is Chinese and didn’t understand my native language English North Yorkshire humour. Was so funny - I just tried to look for some positives.

[Greenmil3 in reply to LindaMorrell]

Linda mine was a neurologist saying remind me how old you are Mr Karcheski (44 back then) as he swings the screen around and says it’s just you have the brain of an 80year old!

[Bloodredroses]

Cheer up once you get it totally diagnosed , as your Specialist totally understands Sjrogens , he can guide you on new medications , methods . Like APS with other G P s it’s all a bit piecemeal . You have now gone to foremost Clinic to treat these unusual conditions . I have APS low at moment overlapping with Sjrogens. G P s look at me like I am a hypochondriac . 😂. My Haematologist does not test for Sjrogens , ref me to a RHEUMATOLOGIST rejected the ref as only treats lupus . G P is struggling to find a London Spec to test for this . I guess I will save up go private to London Bridge . Rest up stay warm think positive thoughts , watch a comedy movie . Hey , a positive you have found the right clinic , many struggle until diagnosed, finding a Clinic to go to . Where is your pain?