Today I saw a rheumatologist. I was referred because I was diagnosed with connective tissue in my eyes in Mar 20. At the time I was referred back to the ‘Lupus’ specialist clinic (which turned out not to be anymore - living off past rep) The referral was ignored despite chasing it 6 months later. (the same Rheumy had dismissed me as having no connective tissue in Dec 19) Last Dec (21) the eye hospital referred me to another rheumy dept nearer to home. I went there because there is suppose to be a Sjogrens specialist -researcher there. Needless to say I didn’t see him.
Instead I saw a dr who clearly had no knowledge outside of the blood test diagnosis.
He asked me nothing initially other than checking my home and GP addresses. ‘A stickler for detail’. Right. He referred back to my appointment with a colleague of his 4 years ago. I had had to write back to this previous dr about 3 times for her to get her report right, as she had several comments that were just incorrect. (warning bells!) ‘Detail’. He wanted to know if I wanted to have bloods redone. I said it is not about that, I need to let you know where I am with it all. He spoke over me asking me for a simple yes or no. Which I refused and I needed him to know that I had a lip biopsy last week and that I had connective tissue in my eyes (that is why I was there!) He again spoke over me and made some comment about not getting a straight answer. When I did get to tell him I was awaiting a lip biopsy result his response was he didn’t know about them. End of. I mentioned being hypothyroid too, he happily told me about his wife also having HypoT. And how when she takes her meds she is fine, but when she doesn’t she isn’t! (insinuating non-compliance -warning bell!) He mentioned with glee the ‘free prescriptions’. He must have seen the reaction because he said, well you can pay for them if you like. I politely explained that free prescriptions or not it is about not wanting the condition....free prescriptions is little consolation. I hate that they make out this is a good thing, as if having a life long condition is a life choice! (warning bell!) He mentioned how hypoT very common. Doh!
He referred back again to the apt 4 years ago, and me having OA. And went into how he was a fellow sufferer, I tried to tell him the OA is not an issue for me...he talked over me again and offered his advice as a fellow sufferer, not as a Dr, of Volterox gel! When I did get a word in I told him I only had a problem with the latest finger to ‘blow’, which has not been like the others and is constantly in pain. I’d question if this is OA? That’s why we will do the bloods he said! (Him and his ‘bloods’!!)
He went on to say that having the dry eyes and mouth doesn’t always mean Sjogrens of Lupus. (As if I didn’t know that) And that is why they only treat if bloods confirm. (Covering arse more like) When I eventually managed to mention the connective tissue, he just bleated something about college in eyes and how it didn’t necessarily mean Lupus or Sjogrens again. So I asked what causes it then. It is sicca syndrome he said. No I said, Sicca is the name of the condition, it is not the cause. Well it is atrophy of the glands he replied. Ok, said I what causes the glands to atrophy and isn’t that all part of Sjogrens? He couldn’t give me an answer. You need to ask the Dental hospital he said.
When I had the biopsy last week, from the conversation between the Dr and her assistant, she struggled to harvest enough glands and commented on the small size. Had to extend the incision to get enough. I’m not expecting a positive result.
I wondered if I might have had antibodies, as have been struggling with dry eyes most of my life and dry mouth has increasingly worsened over the last 20 years. Might it be that the antibodies themselves have now died out, as they have destroyed the glands and have nothing left to destroy?
This twit of a Dr said how Sicca was much more prevalent than Sjogrens. I stopped myself in time, before I asked if that was because of the incompetence of Drs to test and diagnose, until like myself it is too late to get the antibody readings. Part of me wishes I hadn’t held back!
So if anyone knows of any rheumatologist that might have a clue, that might be worth seeing please let me know. I won’t be going back there again.