Newby here feeling generally awful

[misswoosie]

Hi. I'm a 52yo post menopausal female ex senior nurse (maybe now you see why GPs are fobbing me off).

Over the last year, or maybe longer, I've had increasing joint pains, tiredness, brain fog, memory problems ,difficuly concentrating, ataxia ( bit like balance probems), hair loss and ?scalp psoriasis and vision problems. Also intolerant of heat and have lots of hot sweats (even when I don't feel hot) which make me dizzy (BP is usually about 120/70) and tachycardia/palpitations. I have vertical ridges in my nails and look pale, particularly under my eyes.

I don't work through choice since we came back from living abroad for 5 years and TBH at the moment I couldn't work, certainly not as a nurse. If I do 4 hours of house work or painting/decorating, for example (have recently been getting my elderly parents house ready to sell) I'm absolutely drained. Having said all that, I don't sleep very well,especially at night, but often grab a 2 hr sleep in the afternoon.

I started taking Vit D about a year ago as thought I might be Vit D deficient and also B12 about 3 months ago, but not made any difference.

I had bloods done privately in June as GP wasn't doing anything. Just kept saying i was depressed , bloods were OK 8 months ago, gave me antidepressants (which made me like a crazy woman) ,coal tar shampoo and sent me for an ECG.

In June my Hb was 12.5 (which is low for me as I always used to run at 14.5 and I'm a smoker) and Red blood cells 3.8 (range 3.8-4.8) HCT was 0.36 (range 0.36-0.46).

Iron,Ferritin etc etc all well within range.

B12 373 (191 -663)

Vit D was "borderline insufficient" at 75.

Inflammatory/Infection markers normal

Thyroid normal, Calcium and Albumin normal . Total protein not done

Kidney function

Sodium 140 mmol/L

Potassium 4.2 mmol/L

Urea 4.6 mmol/L

Creatinine 63 umol/L

estimated GFR (eGFR) 86 ml/min

Blood glucose all good. Triglycerides and LDL cholesterol below normal range??

So nothing abnormal really going by the numbers, but not exactly overun with red blood cells or haemaglobin.

Unfortunately don't have blood results from last October to compare.

2 weeks ago I had an episode of sparkly lights in the upper outer part of my right eye. Moving in a wave from the top when it started. It lasted about 10 minutes. It came on suddenly, I couldn't see well enough to use the computer and it went away in the same manner, ie from bottom to top. There was no headache.I haven't had a migraine for maybe 10 years, and didn't ever get visual symptoms when I did get them. I've had my eyes tested since then and everything was good.

At the weeked I went to A/E as I was concerned about a slightly swollen, red and painful calf. Knee had been sore for about 2 weeks after kneeling a lot, but this was ache in the calf and swelling with some heat and redness, so thouyght should get it checked. I have quite bad varicose veins and really bad broken/ thread veins on that leg. Anyway, after waiting for 4 hours for blood results to come back, D dimer was negative and mostly bloods were the same, apart from

Creatinine was 76 up from 63 and the eGFR had dropped to 71 from 86 and thenlab report said "Stage 2 chronic kidney disease indicated if other evidence".

Total protein was 63 (60-80).

It was only when I got home that I looked at the clotting results and saw that my APTT was 40 (normal 25-35) and haematology had said "is patient on anticoagulant therapy? If not recheck".

So being an ex nurse I know a bit about some things, a lot about a few things, and nothing about others so I head to the internet with a hunch that maybe the kidney, clotting thingy and the borderline anaemia (which isn't iron deficiency) might be connected, or that I'm just a post menopausal depressed ex nurse.

My understanding is that Lupus anticoagulant can cause prolonged APTT. I know that not everyone with Lupus anticagulant has SLE (which coincidentally is my initials) and vice versa, so maybe I should've posted on a different forum.

Any thoughts or ideas appreciated. I'm exhausted from the concentration of writing this.

[AnnNY]

I would check out this website: hughes-syndrome.org/about-h...

Did you have the Lupus Anticoagulant test? I might have not read your post right.

LA is actually a test for APS/Hughes syndrome. Clotting and a lot of neurological symptoms can be caused by APS without Lupus, although there can be overlap.

I would suggest asking for the tests recommended on the Hughes syndrome website. There is also a seronegative version of APS (as there is for lupus).

I don't know how LA affects APTT, but with the symptoms you're having, I would definitely suggest asking to be tested.

Unfortunately, taking anticoagulants is the treatment, and taking anticoagulants is controversial with out having a stroke, dvt, or a history of miscarriages.

You sound like you might be having some thyroid problems. There is a very good Thyroid forum here, as well as a "Sticky Blood/APS" forum. Were you tested for ANAs?

I would also think a good rheumatologist with a good understanding of APS would be in order to sort things out.

[misswoosie in reply to AnnNY]

Hi and thank you. No I haven't had the test for LA, just the APTT of 40 at the weekend. Actually, the PT was 15, so at the upper end of normal. I have an appt tomorrow to get bloods checked, but not sure exactly what they're checking.

I had read a little about LA and APS and knew that anticoag was the treatment from one of my previous jobs as an anticoagulant /DVT nurse specialist and Stroke Nurse Practitoner but all of the patients I was involved with had had thrombotic episodes. I can see why anticoag would be contoversial without a history of events. Is there any benefit from aspirin do you know? I don't relish the thought of being on warfarin, but neither do I relish the thought of a stroke or other event.

Hopefully the bloods tomorrow will come back normal.Having said that, that means i won't be any closer to knowing waht's wrong with me. Fading fast here, just typed last senetence abiut 6 times. Thanks again will check sticky blood!

[misswoosie in reply to misswoosie]

Mmm- lookes t the site and it all sunds too familiar. I used to get pins and needles a lot, but that's got better since taking B12 and Vit D (which I've now stopped since worried abotu lidney function). The giddiness is aprticulalry true for me . i HAVE TO be very careful cominbg down the stairs and can't carry things down.If I walk on a narrow path (nor that we've been out walking much this year) it's a constnat struglle and Ican't talk or look around, Ihave to keep my eyes down to the ground. AT one point I thought I might have had a stroke affecting the back of the brain. It seems a little better at the mment. Ia lso had wndered about MS too.

[AnnNY in reply to misswoosie]

Many people with APS are on just baby aspirin, or aspirin and plaquenil and do well. Aspirin definitely improved my symptoms, but now I am on Plavix and Eliquis and I am doing better with more anticoagulation.

Let us know how the tests go. Often I was told APS patients don't have raised SED rate or CPR. I often have one or the other, but I also have UCTD (lupus-like) and Sjogrens.

Let us know how your tests go.

[misswoosie in reply to AnnNY]

Oh my. I had to google Eliquis as I work on generic drug names. I knew Plavix brand name from my husbands work in the USA though. In scenarios like this I wish I'd never been a nurse, especially an anticoag/DVT/Stroke nurse. Why/how did they decide on apixaban v warfarin?

My TFTs were in range with Free T4 14.39 at lower end. Have had TFTs checked numerous times as when I had depression/ tiredeness they always checked them, but never anything else when they were normal!

Wish I'd kept my USA blood results from my yearly medicals to look at trends. Only got rid of them when we moved 3 months ago as I never thought they would be useful or that it would be so difficult to get GPs to practice medicine ie history of presenting complaint, examination, investigation with maybe a little clinical decision making thrown in there for good measure. Sorry, I'm being cynical.

At the moment I'm really concerned about going to court as a witness. Obvioulsy it'll be stressful and the other day when I was trying to help elderly parents with kitchen planning and they're struggling and being a little inflexible (!!) my brain just stops working and I can't remember my chain of thought or wrods or what I'm supposed to be doing. I'm the only eyewitness who saw the defendant actually commit the offence so I have to be able to give my best evidence.

[PMRpro in reply to misswoosie]

The current practice seems to be to start new patients on one of the new generation anticoagulants - I've just been switched from Sintrom, via warfarin (because the INR reading were swinging wildly for no apparent reason and I was having my INR checked every few days and still couldn't stabilise it) to Pradaxa. The consultant said that most new patients go straight to the one that is most appropriate. Pradaxa is supposed to be particularly good for atrial fibrillation, Eliquis for venous thromboembolic events. They have the supposed advantage of not requiring monitoring (but we won't go there) and aren't affected by diet. I never had any problems with Sintrom until January when I had a flare of my autoimmune disorder and my pred dose was increased from 5 to 15mg - but I'd been fine at 15mg originally, go figure.

I had some wonderful bruises to start with, that seems to have calmed down although I did stretch the dose intervals to 15/16 hours instead of 12 as I was in the US with no access to a doctor - pushing it a bit as the half life is 12-14 hours. Now back to 12 hour intervals to see if I bruise so badly again - if so I will probably have the dose reduced to 220mg/day from 300mg/day.

Sintrom - Acenocoumarol

Eliquis - Apixaban

Pradaxa - Dabigatran

[misswoosie in reply to PMRpro]

I like that (where does everyone get their little smiles and flowers from?) " They have the supposed advantage of not requiring monitoring (but we won't go there) ". I left my CNS post in anticoag/DVT before any of the new ones were licensed, but was workimg in stroke and always had my concerns that folks (especially elderly people with AF) would go onto one of the new ones and then go off into the big wide world and everyone would forget that they were still fully anticoagulated! At least if someone is on warfarin then they have to see a HCP every 12 wks at least . Are any of the new ones licensed for primary prevention of events in people who have these auto immune conditions ie have they done clinical trials?

Anyway, just been to docs and they've repeated clotting and U and E's so we'll wait and see. Couldn't get urine dip there and then as he was a phlebotomist but hopefully he'll give it to someone who can.

If they were checking your INR every few days and also making dose ajustments each time then they probably weren't managing it very well.

[PMRpro in reply to misswoosie]

We'd had plenty of practice and no, we weren't altering the dose each time, it was to see what was happening. There was no rhyme no reason to the pattern - or lack of it! It shot up or down in 2 or 3 days with no change of dose.

I have to see the doctor to get 3-monthly prescriptions so I won't be forgotten. And have to see the consultant every year as Rome has to give permission for it to be used at all.

[misswoosie in reply to PMRpro]

From experience of working as an anticoag specilaist nurse for 4 years and managing and dosing inpatients and all anticoagulated patients from around 50 different GP surgeries in the area, there's always a reason for eratic INRs. One just needs to be an expert to find it!

I wasn't suggesting that you would be forgotten, but that some elderly people who tend not to get the specialist care they deserve and need (IMO) and are prone to polypharmacy, decreasing kidney function and reduced cognition etc etc might be. You're obviously a special case needing permission from Rome (preumably because the drug is being used outside it's license)

[PMRpro in reply to misswoosie]

No, I have a/fib. Approval has to be sought for every patient put onto it - it's just their system.

[AnnNY in reply to misswoosie]

I know the studies on the novel anticoagulants are not complete yet for APS. My rheumatologist specialized in APS, was clearly very research minded and I knew she had used this combination before, so I felt that she had the experience to give me this. If I get a bruise, it can look like a darker hue than usual, but that seems to be the only side effect. She told me what to look for if I was having a problem, and I don't have any signs of excess bleeding at all. The idea in APS is to get you to normal blood flow, since your blood is "sticky" to begin with.

My T4 was at the dead bottom of the range. I had to talk an endocrinologist to increase my dose (I was on 25 mcg--a very, very small dose). Before having my dose increased, my heart rate was the lowest I had ever seen, I had palpatations and ectopic beats. All that went away, plus I got some extra energy. I'm going to see her soon and see if I could go up another 25 mcg, but they are pretty set on their ranges.

Oh, I use brand names, because I remember them, and am more likely to spell them correctly.

Hope your court day goes well. I know exactly how you feel. Last night someone called me late and I was losing a few words here and there, but it's better than being completely muddled.

[misswoosie in reply to AnnNY]

Hi. Great that you have a good rheumatologist. I was involved ( as a nurse) in some of the stroke prevention clinical trials of the new oral Anti-coags about 15 years ago. Court not till September if it doesn't get postponed again like it did in March. I think mental stress and concentration finish my brain off more than physical activity. Sometimes utter rubbish comes out of my mouth.

[PMRpro]

The symptoms you describe are typical of an autoimmune disorder of some sort - I think a good start might be finding a different GP without preconceptions and who will listen to you - easier said than done I know but...

A couple of years ago that vit D level wouldn't have been borderline deficient - it would have been way above the acceptable range so I wouldn't think that is causing any problems. Low grade anaemia is typically found in autoimmune disorders. Even if it is an inflammatory disorder the ESR/CRP are not raised in a proportion of patients. The fact you have joint pain and signs of psoriasis suggests you really should be referred to a rheumatologist for consideration of early PSA - or some other arthritis.

I spent 5 years with a similar very "normal" range of blood tests but with symptoms - eventually I worked out for myself what it probably was although the GP I usually saw just said "the bloods are normal, can't be anything, it'll be your age". The rheumatologist I saw wasn't particularly interested either - even when I had a textbook response to corticosteroids which is the standard treatment for my autoimmune disorder. A different GP in the practice was convinced however - and so have all the doctors I have met in the 7 years since.

In the meantime - I'm sure you know this but breaking the tasks into bits may well help the fatigue. Stop for a rest long before you are exhausted and the amount you can do will mount up. You might find this interesting/helpful:

lupusuk.org.uk/managing-fat...

and I really can recommend the links Paul included on Pacing, especially the one from Action for ME - it really is worth the read.

And summon up the energy to at least seek another GP and tell them you want to be referred to rheumatology at the very least. Some departments may be better than others - wherabouts are you?

[misswoosie in reply to PMRpro]

Hi and thank you.

I understand about the Vit D levels, but I assume that the normal ranges were changed for a reason. I also agree that it's not likely to be casuing symptoms, as one assumes my Vit D levels were lower in the past prior to taking Vit D supp's, and symptoms recently have got worse, not better.

I didn't realise about the CRP not always being raised. Thanks for reminding me about the ESR as had forgotten about it. Do they still do it? Also haven't had reticulocyte count done, which might be useful.

Interestingly, and maybe it was just a coincidence, I had a very noticeble initial improvement in joint pains and energy when I stopped eating bread. It seeemed to last for about 4 weeks, so maybe it was just a coincidence. Also, I seem to have developed mild allergies to several garden plants, which I've never had before. Even just touching some plants brings me out in a rash on my forearms and when I broke the skin slightly last week with a Pampas grass leaf I got a really good erythematous raised line along the edges of it.

As we've moved 3 times since we came back from living abroad, this current GP practice ( whom I didn't mention in my post) is our 3rd. Things like the scalp psoriaisis didn't appear until GP practice 2 about a year ago. I put it down to change in the water and tried lots of different shampoos to no avail. Have had to stop using any styling products and now just use only a light conditioner. My hair , particularly where I have the hair loss and scaly, scabby scalp is like straw, especially when it's wet. I wouldn't have thought that Coal Tar soap was the best thing to give me as I've had 2 Basal Cell skin cancers removed in the last 15 years.

I have suffered from depression for over 30 years, but TBH none of the meds really helped. Now I'm not on anything as didn't feel they were helping (SSRIs/SNRIs) and I was getting lots of palpitations, tachycardia and ectopic beats etc.

The latest GP practice we've only been with for 3 weeks. Made an appointment and took my blood results along and asked her about scalp and she looked at it and told me to put some hydrocortisone on it. I only got time to mention how sore my thumb joints were before she told me it was arthritis as thumbs get a lot of wear and tear. Regarding tiredness is sending me for spirometry tests as I'm a smoker. Funny, when I worked with a Haematologist and used to say how good my Hb was he was always so quick to point out that it was artificially high by about 1.0 because of the carboxyhaemaglobin. They don't seem to take that into account when they're looking at lower Hb in a smoker though.

My husband called the GP this morning and asked about getting some repeat bloods done (clotting and kidney function).They said I had to see a GP first as they hadn't received a letter from A/E. First appointment available was 2 weeks time,so he took the blood results up there and they're passing them to the GP and we're waiting for a call. I won't hold my breath waiting.

We're in the North East, about 10 miles south of Newastle upon Tyne and I believe they have a good Rheumatology dept. Off to bed for a sleep now. Thanks again.

[PMRpro in reply to misswoosie]

Get in contact with the NE group helpline - they are based in Gateshead and have tags on the best rheumies there, whether Gateshead or Newcastle. One is just about to retire unfortunately.

Their website, with all their info and contact details, is:

pmr-gca-northeast.org.uk

So where are you - around Durham (don't go there for a rheumy!)? I used to live in Durham and my husband worked at UHND, so did I briefly. Our practice then wasn't too bad but who knows now, 6 years on.

I found I developed allergies in the early days of PMR and one is to something in the structure of highly commercialised hard wheat. I cut it out almost completely years ago and that sorted that rash! I can eat Canadian soft wheat. spelt, kamut and rye without problems so it isn't gluten. I can eat wheat on higher doses of pred but it needs to be above about 12mg, now at 10mg I'm starting to react very slightly to wheat - we were in Canada and the US for nearly 4 weeks and avoiding wheat there requires some skill!

[misswoosie]

Small world! Yes, UHND is closest hospital but not setting foot there. I went to the QE for A/E at the weekend.

Haven't eaten anything but granary bread for years, although finding decent bread in the US was a nightmare, at least where we were in the SE. Recently I've just re introduced spelt bread and so far it's not made joints etc any worse. Although I smoke, we don't eat much refined carbs and have a relatively healthy and varied diet. My husband doesn't eat meat and I eat very little.Maybe once every 10 days. We eat lots of veg, raw and cooked and a good variety. I drink alcohol maybe once every 3 months and drink mostly water(3-5 big glasses) with 1-2 cups non-instant coffee and 1 back tea and 1 green tea a day. My appetite is good and in fact I'm eating slightly more than normal but i've lost about a stone and a half in weight, but not sure exactly on time scales as just been weighed last week and the time before that was last October.

Can I ask what PSA and PMR are? I'm guessing Psoriatic arthritis and Poly myalgia rheumatica.

I have an appointment to get bloods checked tomorrow.My husband took the phone call, so not sure if it's just the clotting . I'll also take a urine sample as when we went for our newby "health check" I forgot to take it. They can dip it and see if I have any protein or blood in there. I've read a little bit about isolated extended APTT and it seemed that it could point to Lupus anticoagulant and some thing about antiphospolipid syndrome, but TBH the details are a bit of a blur, like a lot of things at the moment! This can increase risk of stroke etc, so I was a bit twitched after I had the episode of sparkles in my right eye 2 weeks ago. Unfortunately I couldn't really check my own visual fields when it was happening.

Haven't ruled out contacting the Haematologist and Stroke Consultant I worked with in Newcastle/North Tyneside in the past for advice.

I've read Pauls article on pacing and found it very informative. That's somethng that will take me a while to get used to as I don't like to leave tasks unfinished and I am (or was) often like a whirlwind. I'm also frustrated that I can't remember things and have started putting reminders in my phone etc and having to make shopping lists,which I've never had to do. Husband is wonderful, but not very organised and doesn't have the best memory.

Will check the website out-thank you.

[PMRpro]

Don't just check out the website - call the helpline for directions to a recommended rheumy!

Yes, PSA is psoriatric arthritis and PMR polymyalgia rheumatica - sorry, tend to assume that PMR will be recognised by someone on this site.

Weight loss is a symptom of PMR/GCA - probably the effect of the inflammation which can be there without bloods being raised. That said, I didn't lose weight with unmanaged PMR, I gained it because I couldn't exercise as normal.

[misswoosie]

Eventually today after my husband going back and forth to the GP with consent forms etc and dealing with disinterested unhelpful receptionists I got the results of my repeat clotting and Kidney function bloods.

My APTT was still above the normal limit at 41 secs but fibrinogen (which was normal at A/E a week ago) was also above normal range.

The lab did a test called APTT corrections, where they add "normal" plasma to my plasma and the repeat the test. When they mixed 80/20 (my plasma/normal) the APTT was still too high, but when they mixed 50/50 it came into range. I believe this means that it's unlikely that I have LA ,AS LONG AS THEY INCUBATED THE BLOOD SAMPLE FOR AN HOUR BEFORE THEY DID THE TEST!. What I'm not sure is, bearing in mind that the fibrinogen is raised,as opposed to low, what it means (if they did it correctly).

The printed report says it's been seen by my Ibiza Babe GP and requires no furthur action.

Let's not go there ATM.

My kidney finction tests were better with creatinine down from 73 to 60, which is what it was back in 2014.

eGFR was >90 so far better.

Husband asked the rotweiler, sorry , receptionist, today about my urine sample from 2 days ago and she said "It was fine, it didn;t need to go off"

Incidentally, I also got the results of a urine microscopy which was done at a New patient GP appointment in Feb 2014. It showed abnormally high number of epithelial (tissue) cells and red and pus cells. However I had no symptoms of a urine infection and the surgery never contacted me about it to suggest antibiotics. There are no results of a urine culture (where they see if the urine grows any bacteria). Wonderful, and I am 90% sure that I called up about the results and was told it was fine. I remember she dipped it and there was some protein so she said she would send it to the lab.

Don't know enough about chronic kidney problems to know whether Creatinine can sail up and down like this depending on what you've been doing ( ie exercise), the weather and how hydrated you are.

Looking over the last 2 years my Haemaglobin has dropped slightly from 13.5 to 12.7, but red blood cells have always been on the low side of normal.

Tired tonight and sick of reading about clotting tests , LA and APA

Not sure what to do next.

[PMRpro]

Ask to see the practice manager for a start. If that gets you nowhere in asking for an emergency appointment with rheumatology at the Freeman/Victoria (not sure which it is offhand) it's probably time to interview other practices. And explain to the PM that you do not wish to have a receptionist telling you that a urine was fine and didn't need sending for proper testing. YOu would like your reports. One abnormal test can be due to all sorts of things - including lab error but more likely GP practice error - they should ALWAYS be repeated. Two abnormal tests requires investigation.

[misswoosie]

Thank you. To which test were you referring when you said "One abnormal test........"?. I agree that particularly clotting can be affected by things like the torniquet being too tight, etc, but this is the second abnormal APTT.

I'm assuming you mean ask the GP to refer me for an emergency rheumatology appt? The GP in the flip flops is my assigned GP and TBH, if she's signed the bloods off as "no further action" then I don't particularly want to see her again.

I know I slate the US HCS but, bearing in mind it's Saturday, I'm not their patient and it was 6am over there, I've just had an online chat with an agent from our Healthcare provider when we were living over there, Carolinas Healthcare System. They are going to contact medical records and pass on the information and my contact details and ask them to email me copies of LAB results from the USA, or contact me if they need more information.

My husband made 4 journeys back and forth to our GP and old GP (who are in the same building, but he had to go to the other location of the old GP as they don't share "a system"!) to get copies of blood results yesterday. Those records should have made their way to my current GPs, via the GP in Newcastle but I know that they never even got to the Newcastle GP, because GP kept telling me they hadn't. I had a 5 minute battle on the phone yesterday with the old GPs receptionist who was adamant that my new GP should have all the results/records back to March 2014. When he reluctantly agreed to print them off his parting shot was "Well they were all normal". Clearly a urine sample full of pus and red cells isn't normal. I'll also be contacting the practice manager at that surgery.

The CHS agent signed off with "Hope you get everything sorted. Have a great day". Thankfully it wasn't a phone call as I started blubbering like a baby. I know it's their customer service standards, but in the last 6 months he's the only Healthcare employee who has shown one iota of concern/empathy or whatever you want to call it.

[PMRpro]

Any test - I worked in biochemical medicine in an earlier incarnation! If ANY test was abnormal in the lab we ran it again to be sure but that was in the old days! A test that comes back with a dodgy result needs to be checked before any assumption is made. In my own world of PMR/GCA, patients may have a raised ESR or CRP one week - but before a knee jerk reaction of raising dose is made it should be repeated just in case - and very often it has gone back to normal. How the blood sample is handled often has a big impact on the result - and GP surgeries are very careless in my experience.

It isn't easy moving between different healthcare systems - the notes get lost so easily and in systems where they are protective about results even moving from one doctor to the one down the road/corridor can cause chaos. Here I can have all my records, in fact am encouraged to do so, and even scans/x-rays can be burnt onto a DVD for a small charge. Some 30-odd years of medical history no longer exists as I spent 10 years abroad - so the previous stuff would have been junked. What I did bring back with me from Germany was in German - no-one could read it. Here, all my brief UK history doesn't exist, not that it is much loss!

Was there a good reason for moving from GP No 2 - if they are in the same building? You no longer have to be in a specific catchment area in the UK.

And no, a urine with white cells, blood and pus requires some clarification - even if it is just a culture and microscope scan. Really NOT acceptable.

Anyway - "within normal range" does not mean it is normal for you or that nothing is wrong. My ESR/CRP have never been raised, they are stubbornly stuck in low single figure results. But I DO have a vasculitis that for 80% of patients has raised results. I'm atypical...

[misswoosie]

GP 1 when we lived near Durham end 2013-end 2015, GP 2 when we moved to Newcastle end 2015- May 2016, GP 3 now, back near Durham, is not same as GP 1, as we deliberately didn't re register with them as they were so useless, but didn't realise quite how useless until I saw that urine microscopy yesterday. Newcastle GP wouldn't even do bloods or look at my scalp earlier this year, hence private bloods in June.

Yes, about rechecking tests. The whole culture in the NHS is different now. The basics ,the foundations , aren't seen as important anymore. One of the many reasons I couldn't go back to working in it.

[PMRpro in reply to misswoosie]

Yes, I thought that might be the case for changing GPs. I have the impression these days that finding a good GP and THEN finding a house may be preferable!

I shall do all in my power to remain here...

[misswoosie in reply to PMRpro]

Luckily we only rent now!

[misswoosie]

I'm off to the Docs today so fingers crossed,but not hopeful. Iw alked yesterday for around 2 miles in the sun but wih only face exposed and last night had some of the worst joint/muscle aches pains I've had recently, although they were exactly like I used to have 10 years ago when I worked 12 hr shifts on a busy intensive care unit.

Body felt hot ie legs felt like they were burning, couldn't get comfortable, threw all the covers off (not like me and it wasn't a hot night-I mean temp' wise!) and then I woke with chest pain which seemed either muscular of pleuritic ie hurt more when I took a deep breath. This morning jpints, particularly in hands and feet are stiff and sore. I recall that when I was a child I had a 48hr episode of chest pain like I had last night which was put down to growing pains. I also used to get very bad pains in feet and legs as a child between age of 8 and 11 is, which were put down as growing pains

Any advice please? Thanks.

[misswoosie]

I've started a new thread under getting diagnosed here

healthunlocked.com/lupusuk/...