Calling London, Calling London, Come in London.
oooh, once more London have done me proud. Thank the Gods and they have helped me make sense of yesterday, chilli cream incident ignoring! Actually now I'm waiting for my GP to ring me back as I need some more advice, the trouble with Zacin chilli cream is if you go out into bright sunshine or get into a hot bath etc then it triggers off the area previously treated. The problem with having suicidally applied Zacin to one's mouth is that hot drinks and hot foods trigger it off again. Ow and bugger :( And may I take this opportunity to thank of all for your kind words and thank you also for keeping your laughter to yourself on this occasion of my dipstickedness :D
So back to yesterday followed by the news just now from London. I suffered again with the awful Schirmer's test, (litmus paper shoved into the eye and left for 2.5 mins) I saw the same doctor again, Dr B, I liked him, he was really nice and he told me that without doubt I had dry eyes (gosh, no! Really?!) but that they were now classed as 'severe' with todays reading :( All the blood tests were fine, which is great he said, till I asked what then was doing everything and he couldn't answer. Then he went off to bring in the 'big' man, swinging white coat Consultant man himself, the Sjögrens expert who declared that although I had all the symptoms of Sjögrens, I couldn't possibly have it because I didn't have the antibodies. (And as I'm sure regular readers of this will know that 25% & 40% of people with Sjögrens don't have them either). He said then I had Sicca Syndrome, one which had been considered before but because of the symptoms had been dismissed because the other stuff made it more like Sjögrens. This is now where the utter confusion reigns of diagnosis but I'll come back to that. I suffer with terrible memory loss, forgetfulness, concentration problems and the like. This means that before this happened I was always slightly eccentric, now I think they see me as deranged eccentric!! The Consultant was quick, liking to lie right back in his chair with his arms behind his head, (I imagined tipping him off it - but that's just me!) and he didn't seem to know what to do for me. He also didn't believe me when I said that the teeth extracted were perfectly healthy (dick head) and I suppose looking back he was somewhat arrogant. However when the Fibro makes me that 'out of it' then I actually don't notice, not to mention that normally full of giggles and laughter (I do that all the time!) I get even worse!!
He explained that he was satisifed that I had dry mouth, they could run the invasive checks but they would only prove it and can't fix it so why bother? Fair enough, he's agreed it's there. He also said that there's been irrepairable damage to the secretary glands of eyes and mouth, and that he he can't do anything for me. At all and Dr B would explain a few things to me and then off I go, as the consultant didn't think I needed to be seen again, and they'd done all they could. I have to say that Dr B understood I was having problems in recalling what I needed to say, and helped me out quite a lot with the consultant for which I was very grateful. They want me to try a new line of drugs for the Raynauds, have no idea about any of the other bits affected, looked at my now purple frozen feet with their fetching curved in big toes but suggested bugger all, and said I was already using the better products for my mouth and eyes, and if I needed to see them again which they didn't think, then I was to ring the Specialist Nurse, who Dr B introduced me too and who found out that I knew far more about Raynauds than she did! For a leading connective tissue team I find much of their treatments and ideas archaric and they little understood Fibromyalgia. It also seems they little understood the new diagnosis too, hence my puzzlement which grew greatly upon checking out my usual medically trusted sources of info and finding clashing info from leading resources and my need to contact London whom I trust implicitly and whose help in the past helped me get the referral, wax on prescription, mouth gel on prescription and a change from drops to gel for my eyes (bliss!). They have also helped me with my research into certain unspoken aspects of Raynauds on internal organs and for which I do occasionally dream of getting a paper written about that and published in The Lancet or British Medical Journal. Not a chance LOL But I digress ( as ever!)
Ok, back to last night/this morning. Sicca Syndrome, dry eyes and/or dry mouth, - even normal trusted sources of medical information, get confused at this point. These being:
* It is possible to have Sjogrens without the antibodies present.
* It is virtually impossible to find any information on Sicca Syndrome that does not mention, refer to, or in some cases even call it the same as Sjögrens.
* Some trusted reliable sources call Sicca Syndrome - Primary Sjögrens Syndrome. (Secondary Sjögrens means inconjunction with another autoimmune disease.)
* it is impossible to find information about Sicca that does not include Sjögrens.
* Sicca Syndrome is caused by illness or similar damaging the secretary glands involved. Sjögrens affects and damaged the glands. (Which then has caused the damage? I'm not aware of having any illness that could have lead to it)
* Some reports have Sicca symptoms include inner ear fluid problems. (I'm always nagging the doctors because my ears itch like fury due to 'fluid' in them.)
* Some reports also claim telangiectasias (red broken veins) on the face, along with a rash too. (Something I developed some years ago resulting in what we refer to as panda eyes as my eyes are white but all around is red!!)
* Renal involvement. (None aware of for me - but have the polyurea and bowel complications)
The Specialist Nurse from London, was stunned that he called it Sicca Syndrome and made it quite clear if I'd been treated there, someone like me with Sjögrens symptoms (which other bodily involvement) but without the antibodies are almost always classed as having Sjogrens, and that to classify someone with Sicca but having all the other symptoms was 'old fashioned' and 'out dated' and misleading to those who fail to recognise organ involvment in sicca whereas its' well known in Sjögrens. Many pleaces now infact are calling those with Sjögrens symptoms but no antibodies as having Primary Sjögrens Syndrome so she said I would be quite within my rights to state myself as having Primary Sjögrens Syndrome! Silly as this sounds that bit really pleased me!!! Probably because it means that for just over three years (from Oct 2002) I was right about the Sjögrens, and many other specialists were wrong, missing either or both diagnosis, plus my GP gave up on it/me.
The nurse said that naturally with such symptoms the hospital would be keeping a close eye on me and monitoring things. She could barely believe it when I said, no, they're not! She told me, (get this!) to ring up and book another appointment with them to see them about the other aspects which the hospital are ignoring :D They should not be left she said! nice lady, oh how I love that branch of London and thank the Raynauds and Scleroderma Association for paying for the Nurses helpine for Raynauds members to have access to specialist advice from several specialist departments across the country!
So, there we have it, I feel more understanding having spoken to her now, I have Sicca Syndrome more known as Primary Sjögrens Syndrome
Three years on and there we have it. But the battles aren't over yet, there's too many questions left unanswered. I feel better about this than I did yesterday. And a whole lot better than I did last night - ugh!
Oh and this is a pic of the German Christmas Market held in the square opposite the hospital but sadly we only had time to admire from across the street :( The garlic bread stall is shaped like a garlic bulb!! You never know what you'll see when you go to Leeds!
So back to yesterday followed by the news just now from London. I suffered again with the awful Schirmer's test, (litmus paper shoved into the eye and left for 2.5 mins) I saw the same doctor again, Dr B, I liked him, he was really nice and he told me that without doubt I had dry eyes (gosh, no! Really?!) but that they were now classed as 'severe' with todays reading :( All the blood tests were fine, which is great he said, till I asked what then was doing everything and he couldn't answer. Then he went off to bring in the 'big' man, swinging white coat Consultant man himself, the Sjögrens expert who declared that although I had all the symptoms of Sjögrens, I couldn't possibly have it because I didn't have the antibodies. (And as I'm sure regular readers of this will know that 25% & 40% of people with Sjögrens don't have them either). He said then I had Sicca Syndrome, one which had been considered before but because of the symptoms had been dismissed because the other stuff made it more like Sjögrens. This is now where the utter confusion reigns of diagnosis but I'll come back to that. I suffer with terrible memory loss, forgetfulness, concentration problems and the like. This means that before this happened I was always slightly eccentric, now I think they see me as deranged eccentric!! The Consultant was quick, liking to lie right back in his chair with his arms behind his head, (I imagined tipping him off it - but that's just me!) and he didn't seem to know what to do for me. He also didn't believe me when I said that the teeth extracted were perfectly healthy (dick head) and I suppose looking back he was somewhat arrogant. However when the Fibro makes me that 'out of it' then I actually don't notice, not to mention that normally full of giggles and laughter (I do that all the time!) I get even worse!!
He explained that he was satisifed that I had dry mouth, they could run the invasive checks but they would only prove it and can't fix it so why bother? Fair enough, he's agreed it's there. He also said that there's been irrepairable damage to the secretary glands of eyes and mouth, and that he he can't do anything for me. At all and Dr B would explain a few things to me and then off I go, as the consultant didn't think I needed to be seen again, and they'd done all they could. I have to say that Dr B understood I was having problems in recalling what I needed to say, and helped me out quite a lot with the consultant for which I was very grateful. They want me to try a new line of drugs for the Raynauds, have no idea about any of the other bits affected, looked at my now purple frozen feet with their fetching curved in big toes but suggested bugger all, and said I was already using the better products for my mouth and eyes, and if I needed to see them again which they didn't think, then I was to ring the Specialist Nurse, who Dr B introduced me too and who found out that I knew far more about Raynauds than she did! For a leading connective tissue team I find much of their treatments and ideas archaric and they little understood Fibromyalgia. It also seems they little understood the new diagnosis too, hence my puzzlement which grew greatly upon checking out my usual medically trusted sources of info and finding clashing info from leading resources and my need to contact London whom I trust implicitly and whose help in the past helped me get the referral, wax on prescription, mouth gel on prescription and a change from drops to gel for my eyes (bliss!). They have also helped me with my research into certain unspoken aspects of Raynauds on internal organs and for which I do occasionally dream of getting a paper written about that and published in The Lancet or British Medical Journal. Not a chance LOL But I digress ( as ever!)
Ok, back to last night/this morning. Sicca Syndrome, dry eyes and/or dry mouth, - even normal trusted sources of medical information, get confused at this point. These being:
* It is possible to have Sjogrens without the antibodies present.
* It is virtually impossible to find any information on Sicca Syndrome that does not mention, refer to, or in some cases even call it the same as Sjögrens.
* Some trusted reliable sources call Sicca Syndrome - Primary Sjögrens Syndrome. (Secondary Sjögrens means inconjunction with another autoimmune disease.)
* it is impossible to find information about Sicca that does not include Sjögrens.
* Sicca Syndrome is caused by illness or similar damaging the secretary glands involved. Sjögrens affects and damaged the glands. (Which then has caused the damage? I'm not aware of having any illness that could have lead to it)
* Some reports have Sicca symptoms include inner ear fluid problems. (I'm always nagging the doctors because my ears itch like fury due to 'fluid' in them.)
* Some reports also claim telangiectasias (red broken veins) on the face, along with a rash too. (Something I developed some years ago resulting in what we refer to as panda eyes as my eyes are white but all around is red!!)
* Renal involvement. (None aware of for me - but have the polyurea and bowel complications)
The Specialist Nurse from London, was stunned that he called it Sicca Syndrome and made it quite clear if I'd been treated there, someone like me with Sjögrens symptoms (which other bodily involvement) but without the antibodies are almost always classed as having Sjogrens, and that to classify someone with Sicca but having all the other symptoms was 'old fashioned' and 'out dated' and misleading to those who fail to recognise organ involvment in sicca whereas its' well known in Sjögrens. Many pleaces now infact are calling those with Sjögrens symptoms but no antibodies as having Primary Sjögrens Syndrome so she said I would be quite within my rights to state myself as having Primary Sjögrens Syndrome! Silly as this sounds that bit really pleased me!!! Probably because it means that for just over three years (from Oct 2002) I was right about the Sjögrens, and many other specialists were wrong, missing either or both diagnosis, plus my GP gave up on it/me.
The nurse said that naturally with such symptoms the hospital would be keeping a close eye on me and monitoring things. She could barely believe it when I said, no, they're not! She told me, (get this!) to ring up and book another appointment with them to see them about the other aspects which the hospital are ignoring :D They should not be left she said! nice lady, oh how I love that branch of London and thank the Raynauds and Scleroderma Association for paying for the Nurses helpine for Raynauds members to have access to specialist advice from several specialist departments across the country!
So, there we have it, I feel more understanding having spoken to her now, I have Sicca Syndrome more known as Primary Sjögrens Syndrome
Three years on and there we have it. But the battles aren't over yet, there's too many questions left unanswered. I feel better about this than I did yesterday. And a whole lot better than I did last night - ugh!
Oh and this is a pic of the German Christmas Market held in the square opposite the hospital but sadly we only had time to admire from across the street :( The garlic bread stall is shaped like a garlic bulb!! You never know what you'll see when you go to Leeds!