I've had two rheumy appts in the last two weeks. The first, which I wrote earlier about, has me joining a wide ranging research into auto immune disorders . Out of that appt I also got a referral to oral medicine and a scan of my glands. I'm glad for this because the mouth and throat particularly are really drying up. Son Number One rings from Hong Kong every week but 20 mins of chat leaves me hoarse and coughing. I use mouth moisturisers and dry eye drops, but the mouth ones just don't reach my throat.
I loved the letter from the research fellow simply for saying it was a pleasure to review LK. Easily pleased ( at one time it might have been " this feckless slummock") The research letter specified ANA sometime positive, plus RNP and PmScl70 antibodies, and the worsening Raynaud's.
I also got a copy of a letter from last Thursday's rheumy clinic. Speedy to ask if GP "would kindly" rectify my low Vit D levels, ( I want to know where the Vit D that I take every day goes, because it's often reported as low).
Protein in urine ( again) and a request to check for diabetes and my blood pressure. My poor GP checked for diabetes about a month ago and I'm fine. Blood pressure I'm curious about other than, on the day, my normal 90 something over 60 something had the diastolic in the 50s.
Sorry I'm mixing up the two appts but I'm sure you'll appreciate it's a gobsmacker to get two a week apart. The non - research appointment is referring me for hydro therapy, which I'm happy about. I mentioned to the medic that my physiotherapist felt that she had gone as far as possible until I gained some weight and she was wary of hydrotherapy given the calories expended. This medic thought expending calories would give me a better appetite. Hmmmmm
I'm already booked for another blood test because my potassium is borderline again, and it looks to me like I'm anaemic. That's for 12 Nov. First cataract surgery on 9 Nov I'm also booked in to see my GP on 19 Nov who, by that time, may know more about my bloods. The really good fun is on 23 Nov for urology to help my urge incontinence (sorry)
It's all go for LK. Why I'm a bit puzzled by some things, I'm fairly happy that at least things are happening.
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Lupiknits
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Hi Lupiknits I suffer from extremely low iron levels at times & the only way you can get them back to normal quickly is by intravenous infusions of red blood cells. You are only in hospital for 2-3 hours & it is amazing how much better you feel.
I am not sure if you have any malabsorption problems with your iron but if you don’t then it is better to eat a diet high in red blood cells such as steak etc
I saw your excitement about being copied in on your Drs letters, all patients have that as a democratic right. You also have a right to look at any notes they may write into your medical history as well if you so choose.
Thank you. Yes I know we're entitled to see all letters and notes, but unless we are directly copied letters, at the very least, we have to rely on our GPs to print out the info. I don't think I'm the only one who can only find out what a consultant has said by asking my GP.
🙌 🙌 🙌 All sounds very positive LK, and a lesson in how it should be! Vvvv pleased for you! Is there compromise hydrotherapy eg you could float in the lovely warm water without expending energy?!?
Ah, the vitamin D paradox...does lupus deplete Vit D, or does Vit D deficiency cause lupus ?!? This study says: 'Evidence is accumulating that vitamin D plays a key role in the pathogenesis and progression of autoimmunity' and there's a delightful diagram showing that idea at the end (ncbi.nlm.nih.gov/pmc/articl....
I just tried to look up the web address of progression of autoimmunity, unfortunately it did not work for me so I will try it again tomorrow when I am not so tired, thanks for that 🍀🍀
In the past I have visited the Turkish Baths at Harrogate. Very interesting, but not much more than a plunge pool and the heat in some of the rooms made me near swoon!
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blood tests negative- what now???
The difference between my local rheumy and the centre of excellence
