Peace of Mind

[Kendrew]

Over the past several months I've not been quite as active on the forum. This has been because I've been busy attending a host of appointments with different medical professionals, ranging from the practise nurse to various consultants, all in order to discover the cause of some uncomfortable and worrying symptoms.

It all began back in March with an escalation in the duration, intensity & manifestation of my previously diagnosed ectopic beats. They became so uncomfortable and alarming that finally, one night my hubby called for an ambulance and I was taken to A&E. With nothing significant detected I was discharged the next day into the care of my cardiologist.

A two week ECG monitor, an ultrasound scan and a CT scan of my heart, together with several blood tests revealed nothing of any importance but did show double and triple ectopics rather than single ectopics....hence the noticeable changes to my usual palpitations. Finally reassured, things improved quite rapidly and normal life was resumed....

....not for long though!

I then developed lower abdominal pains and discomfort, which over several weeks intermittently increased in severity.

Again, this culminated in a journey to A&E in Warwick (I was staying at my sons house for the weekend) when I developed excruciating lower left abdominal pain. After lots of blood tests and various medical professionals prodding and poking me, an x-ray finally revealed a blocked bowel. This rectified itself over the next 24hrs but the lower abdominal pain/discomfort continued to come and go, so after some 'insistence' my GP referred me to a gynaecologist and a gastroenterologist.

Thankfully we have private medical insurance through my husbands work, so appointments and scans were undertaken very promptly.

As a result of all these investigations, I now know my ovaries are normal but a small polyp needs to be removed. Most importantly though, I now know I don't have colorectal cancer or any other concerning abnormalities. I do however have some mild diverticular disease which apparently has been the cause of my discomfort.

My sister has diverticular disease, as did my father.....another condition that's governed by inflammation and thought to also be linked to autoimmune deficiency.

Interesting considering my sister also lived with PMR for 3yrs and my father also had it for the last 8yrs of his life!

I feel so relieved and reassured, and pleased that my persistence (and insistence!) to have all my symptoms thoroughly investigated, has led to such a satisfactory outcome.

It's so important to do this, not just so we can detect more serious conditions such as cancer at the earliest possible stage, but also to hopefully simply just receive peace of mind.

I initially felt quite the hypochondriac and somewhat embarrassed at the continual emergence of new and worrying health concerns needing frequent attention from my GP.

One problem occurred and then that just seemed to snowball into more & more.

Worry does not support our health and well-being, but peace of mind certainly helps. It allows our stress levels to decrease, which in turn better supports all aspects of our health, including our immune system, our mental health, our ability to 'bounce back' after flares or other illness, our sleep patterns and our resilience.

If something doesn't feel right, don't be afraid to be persistent, and keep on asking the questions you need answers to until you're happy.

We all deserve to be as well as we possibly can be and where are health worries are concerned, the one thing we all wish for, is peace of mind.

Wishing you all Peace of Mind.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about all the different health worries you have been through recently… and extremely pleased that none proved to be as serious as you undoubtedly thought they were at the time.

As you rightly say, peace of mind is paramount. Hopefully you can now get on with enjoying life to the full with your family again. 🌸

[Kendrew in reply to DorsetLady]

Thankyou.I'm off to Cornwall for 2wks next Fri and my son & daughter in law will spend the second week with us. I can't wait.

[HeronNS]

Thank you so much for this update and assurance that your problems are manageable, and the worst possibilities have been ruled out. Such a relief! Glad that you were able to receive the necessary investigations in a timely way. The additional stress of long waits certainly doesn't add to our well-being. 💐

[Hoofprints]

So pleased you have answers now and a way forward. I hope your symptoms settle and that you don't have any more news symptoms. Having one autoimmune condition is quite enough to contend with!! Have a good weekend 🍀

[Kendrew in reply to Hoofprints]

Thankyou.

[yogabonnie]

So happy all is well!!! I have diverticulitis disease..just went through a bout but the clear liquids for 3 days and soft for 2 cleared it right up. Peace of mind is the BEST!!!

[Kendrew in reply to yogabonnie]

It seems to be more common than I'd realised. At least it can be managed. Pleased to hear your current episode has settled again.

[PMRpro Ambassador in reply to Kendrew]

ncbi.nlm.nih.gov/pmc/articl....

says"The incidence of diverticular disease has increased over the past century (2,5,6). Autopsy studies from the early part of the 20th century reported colonic diverticula rates of 2% to 10% (6). This has increased dramatically over the years. More recent data (5) suggest that up to 50% of individuals older than 60 years of age have colonic diverticula, with 10% to 25% developing complications such as diverticulitis."

By 85 years of age, 65% are thought to have diverticular disease. It is a disease of the west in general - lack of fibre and ultraprocessed foods contribute greatly!!!

[sidra1968 in reply to Kendrew]

Yes, I also have it. Whenever I feel a twinge I do the clear liquids for 2-3 days. Your comments about getting peace of mind are spot on. Glad you got all the tests and not be so worried now!

[Pollyanna16 in reply to Kendrew]

Hi Kendrew, I’m so pleased for you to get a diagnosis & well done for your persistence. I discovered I have diverticulitis after I had a MRI on my spine! Enjoy your trip down west xx

[Bcol]

Good morning. So happy that you have finally got the answers you have been looking for and as you say that "peace of mind" that will enable you to enjoy a less stressful life. You can now have a far more more enjoyable and a lot less stressful trip to Cornwall next week.

[Kendrew in reply to Bcol]

Thankyou Bcol.

[123-go]

What a worrying time for you! You’ve been exceptional in your search for answers, Kendrew, and it takes a lot of determination to keep going when so poorly! Your story perfectly illustrates the importance of being one’s own advocate. You must have been so frustrated at times but your perseverance has paid off. I applaud you 👏👏👏👏.

[Kendrew in reply to 123-go]

Thankyou so much for that. I've sometimes doubted whether my own determination was nothing more than hypochondria, but I realise tha doesn't matter, but peace of mind does!

[123-go in reply to Kendrew]

If anyone ever suffered from hypochondria it certainly isn’t you.

[Kendrew in reply to 123-go]

😘xx

[Lclmlbls]

Hi Kendrew, I’m glad to hear you’ve had your recent problems explained and no underlying serious problems have been shown to be the cause. I understand what you said about feeling like a hypochondriac though. Go enjoy you holiday.

[Kendrew in reply to Lclmlbls]

❤ thankyou

[Jackoh]

Well done Kendrew for persisting when you knew you needed more tests etc . It is particularly difficult when you don’t feel well in yourself.

Sorry that you have had a round of things one after the other and good that you were able to pursue these symptoms privately. Unfortunately with our broken NHS , things can take very long to be resolved.

All the very best for the future and I’m so glad that you have “ peace of mind” which must make all the difference to a satisfactory outcome.

Take care. X💐

[Kendrew in reply to Jackoh]

Thankyou.

[Bluesew]

So pleased for you and glad you now have peace of mind - and you are right to be persistent - we know our bodies best. Unfortunately for those of us without medical insurance we have to wait a very long time for tests and scans and appointments to see consultants so that peace of mind is elusive. Wishing you all the best.

[Kendrew in reply to Bluesew]

Thankyou

[Booklist]

I agree. Last Saturday I had severe pain in my right eye so went to A&e. After many different tests they said it wasn't GCA but that I was rightt to get it checked. I even had ultrasound under my arms. Still don't know what caused the pain . It's almost gone now anyway. So sorry you have had such a bad time. Enjoy your holiday

[Kendrew in reply to Booklist]

Thankyou.Pleased to hear your problem is resolved.

[Indigo2417]

Hi Kendrew. Glad you have finally got some answers. You commented on my post recently regarding lower stomach pain, so I’m interested in your experiences. At the time, I was waiting for a scan, which I’ve now had and I’m waiting to speak to the GP about the results. The radiologist said she couldn’t get a clear picture, so asked if I would mind having an internal examination. She did that and said she’d found nothing to be concerned about and would send a report back to my GP by Friday (yesterday ). I’m going to ring for a consultation on Monday to see what’s next. I’m still getting the pain in varying degrees and I want to know what’s causing it, so I’m going to persist with this. Will do a separate post after I’ve spoken to GP on Monday. I hope you have a lovely holiday. You deserve it.

[Kendrew in reply to Indigo2417]

Thankyou.....and keep on pushing for the answers you want. Wishing you a positive outcome too.I'll look put for your post.

[marionofnorwich]

Good work @Kendrew. I think we still have to be our own detectives and be prepared to eliminate conditions or problems as much as find them. I always said to my GP, long before PMR that so long as we could exclude anything life threatening I could live with the odd annoying symptom. Glad that you are feeling better too

[Kendrew in reply to marionofnorwich]

Ditto.

[greengages]

Hi Kendrew, so pleased you got your answers, I didn’t and was told for a long time it was IBS. After a lot of bowel infections now have complicated diverticulitis, a fistula and adhesions which became apparent through an urgent MRI because of weight loss and yet another infection of the bowel. Now I have to have major surgery in 2 weeks and will have to have an irreversible stoma. Your family history is very interesting and I wasn’t aware diverticulitis was an immune condition but it makes sense. I often wondered if some of the damage was caused through the steroids. I wish you well and hope you stay well and pain free in the future and thank you for sharing your journey 🙏🙏

[PMRpro Ambassador in reply to greengages]

That is appalling because IBS should be a diagnosis of exclusion - exclude the other things and in the absence of any other option, they can say IBS, not assume it is that from the outset - which I get the impression quite a lot of GPs seem to do.

This a quite a good article I think

sma.org/inflammation-in-bow...

It would be interesting to know if patients with rheumatogical disease are more likely to develop IBD - it is known they overlap but is there a tighter link?

medpagetoday.com/meetingcov...

I asked the same question about atrial fibrillation - and a few years later a study showed that indeed, RA and PMR patients have a higher incidence of a/fib.

[greengages in reply to PMRpro]

thank you PMRpro I’ve read the articles and they are very interesting. I’ve been following an Ayurvedic way of eating for my dosha under guidance of a reputable practitioner but I think the damage was already done. It wouldn’t indeed be interesting to know if those with rheumatological disease are more likely to develop bowel problems, a lot of people here do mention theirs too. 🙏🙏

[Doraflora]

I’m so glad you’re all fully tested and sorted, Kendrew. You’ve certainly been through the mill but thankfully come out well on the other side.

I agree, peace of mind and decreased stress levels is paramount.

Keep well now! x

[Kendrew in reply to Doraflora]

Thankyou

[Poshdog]

Brave girl, impressed by your perseverance and so please results are good. Enjoy Cornwall, you deserve to xx

[Kendrew in reply to Poshdog]

Thankyou ❤

[DogAgilityObsessed]

I’m so sorry about all the discomfort you’ve experienced but pleased you persisted and got some answers. It’s good to hear how you are doing though as I think we both joined this forum at the same time. Take care of yourself and enjoy Cornwall.

[Kendrew in reply to DogAgilityObsessed]

Thankyou.

Yes, I believe we did both join around the same time.

[Louisa1840]

Thank you Kendrew, yes, we have missed you lately. I too am sorry to hear of all the difficulties you have had recently but well done you for being informed and persisting until you got a satisfactory result! I think it's a good idea before you go into your doctor's surgery, to have a list of your questions/concerns because, if you're anything like me, your mind goes blank once you're in there!! Worry is another word for stress and it's the big detractor from peace of mind. Also, it's sometimes very hard to be objective about ourselves (is it even possible?) and to see/admit that we are stressed........

[Kendrew in reply to Louisa1840]

Very true.....and thankyou.

[Stills]

good to hear, enjoy Cornwall, we’re going to Looe later this year. Cancer tests in 2023 found diverticulitis in my case with strange symptoms, it’s a weird condition isn’t it. Wishing you good days x

[Kendrew in reply to Stills]

It certainly is a strange condition. My sister has been very helpful and informative. Unfortunately she has really bad episodes when she's quite poorly. Thankfully mine is considered to be 'mild' at the moment.

[Charlie1boy]

Good to hear things are a bit better for you. Takes a bit of Yorkshire stubbornness and resilience to get the help you need!

Paddy

[Kendrew in reply to Charlie1boy]

Haha! Thankyou.

Shouldn't be a 'battle' though should it!

[Charlie1boy in reply to Kendrew]

Nay lass! 😅

[Kendrew in reply to Charlie1boy]

Hahaha! 😄 Love that.

[Pixix]

my hubby was diagnosed withIBS, but we pursued it & pushed a bit, saw a consultant then colonoscopy & it’s diverticular disease. My Mum had it for many many years so we recognised the symptoms. We know have a different diet with no ready meals, no spicy food etc. the printed diet he was given is 44 pages long! As long as there’s no flare up, he’s fine. I did have a blocked bowel once, but was already in hospital after surgery…most unpleasant! Glad you have private medical, & no waiting! S x

[Kendrew in reply to Pixix]

Thankyou....and wishing your husband and yourself all the best.

[Pixix in reply to Kendrew]

thanks…we’ve had a lousy patch…David in hospital with pneumonia, urosepsis & acute kidney injury, while I caught C.Diff in his ward before it was quarantined, then Covid (first time & tested positive for 14 days, & still sick after 3 weeks) & Vertigo, plus we had to cancel our 2 weeks holiday in Italy! S x

[PMRpro Ambassador in reply to Pixix]

Was your holiday the last few weeks? If it is any consolation, you would have not enjoyed temps hovering just under 40C! It has been brutal! Even up here in the mountains

[Pixix in reply to PMRpro]

We should have left home on 13 June for 2 weeks. We love the heat, & it needs to be high to despatch my sciatica into the never never for a while! But yes, I’ve been following the forecast, & coukd be high, even for us, thanks so much! I thought it was mainly July & August that were that high, tbh. We had a cycling holiday through umbria one year (my annual leave was always first two weeks in August)…& it was above 40C & we were chugging up the hills…to Assissi, Spello, Spoleto…they all seemed to be perched on the hills! It was independent, given a bike & map, but they moved your luggage for you. Lots of the others (about ten in total) were flagging, but we were very happy! We did another one in the same heat the next year…borders of Tuscany & Umbria…must have been mad…& fit!! These days I can only manage to do something every other day…pick villas with glorious views & small pool, & only go out every other day (unless supermarket trip needed). That’s the only way my stupid body can cope!! S xx

[PMRpro Ambassador in reply to Pixix]

It IS usually July/August but all bets have been off for the last 18 months or so and it has alternated between 5C too low for the time of year and 5C too warm with a few days of each. It was the wettest May on record. The rivers are in full spate up here and getting worse as the snow is now melting very fast with all the rain, As soon as you get down out of the mountains there is more sun but 40C in the shade is 50-ish in the sun, It has been very humid which is draining and this week we have Sahara dust again and the air quality is disgusting enough for warnings to be issued about overdoing things outside. I have barely been able to see the mountains behind the village, barely a kilometre away!

[Pixix in reply to PMRpro]

Humid!! Plus the dust! Unbelievable…of all places you should have clean, crisp & beautiful air. That’s lousy! I follow a group of people visiting Ortisei, which is where I really hoped we may visit this year, & the weather varies within a day…pouring rain with hail, then too hot. We used to go to Switzerland every august & could predict the weather from year to year. Storms only happened late afternoon when it got too hot…& the next morning was crystal clear & blue sky! In my fave village they have localised flooding & rain for two weeks! Hard to plan anything. We have decided Cornwall is too far in our semi recovered state & looking nearer to home. But looking at last minute bookings to minimise risk of loss of money (we don’t usually take out insurance for uk travel). It would be so good to go away, away from the house & garden renovations. I think we set too hard a goal for this year, really! I already had ten diseases, I think, & still busy adding more! What a mess my body is!!!!! Hope your weather improves, & really soon…midsummers day & the solstice etc has all happened (& people sprayed Stonehenge stones with orange food dye)! S xx

[PMRpro Ambassador in reply to Pixix]

Ortisei is not far from me, similar weather to ours, Yes, totally unsettled as they keep telling us! Can have nice mornings until just before lunchtime when it is hot and sticky and then goes downhill. We haven't had many days you could say you could go into the mountains safely (if you are a local that is, tourists still go!). Couple of weeks ago they rescued 2 cyclists within a week who'd set off thinking they would have normal service and met snow on the pass. In shorts and trainers. Even on a good day temps at 2000m can be in lowish single figures when it gets stormy. And the storms can be violent.

Don't care what it does after next Friday - heading slowly for Scotland and the family! I really don't enjoy July and August here, heaving with tourists, queues if you want to drive anywhere or take the bus! So I can thole rubbish UK weather!

[Pixix in reply to PMRpro]

ooh, good to hear you are making a trip, that’s exciting! Will be lovely to see your family. Yes, we live in a National Park, which gets swamped as soon as the kids are off school,but luckily we live in a quiet part! I saw some storms had been more violent for the time of year, & realised Ortisei weather was prob similar to yours. But snow at height inthe alps before end June is quite common, don’t visitors do their homework?!?! I will wish you a happy holiday & travels now invade I forget before end of next week. Now have brain fog coming from covidas well as fibro & poly, & half the other stuff! I can’t even remember what I’ve got wrong nowadays…I have a list I can copy & paste! Brain fog rules…take care of yourself,please! S x

[PMRpro Ambassador in reply to Pixix]

It is - but not a few feet that doesn't then melt with in a few days! A stage of the Giro had had to be shortened because it was to be snowing rather than raining. They are 3 weeks late opening the Stelvio Pass from Vinschgau to Bormio because of the quantity of snow and you are still driving through 3m of snow walls along the road! But even in the morning, the forecasts are only claiming 70% accuracy - not the usual 90% due to stable high pressures that are normal.

[Pixix in reply to PMRpro]

Oh, boy! Didn’t realise it was like that. A major change of weather patterns in so many countries. I didn’t think about it, but I would have expected the Stelvio pass to be open. They had snow on the mountains in the Ortisei photos last week, but it melted the following 2 days as expected. All very strange & makes holiday planning an impossibility unless you go to Tenerife (but then perhaps their weather is changing, too)! I mention that as it seems to me to be the one place you can guarantee 21 degrees nearly all year round in the south!

[PMRpro Ambassador in reply to Pixix]

Oh we had snow on the tops last week, but it was gone by next morning. There has been a procession of swirls of low pressure and precipitation over the Alps for WEEKS, If you look at this in the next hour or so you will see what I mean

wetter.provinz.bz.it/satell...

They develop in the Med as tiny dots and then swirl their way north-east across the Alps. getting stuck when they get to west of Trient and depositing their wetness and moving oh so slowing on. We call them Genua low pressures and they are traditionally the source of plenty of snow in the Dolomites on both sides. About 25-30 years ago they started to fail. Instead of the massive dump of snow in November followed by cold sunny weather until spring with only occasional top ups which ensured snow security and white valleys throughout the winter, they came later and less until we were dependent on artificial snow until about New Year. Recently there have been massive dumps as late as March - wet soggy stuff that breaks trees and is unstable, increasing avalanche risk, and is useless to man nor beast. Totally different to what it was when we moved here.

[Pixix in reply to PMRpro]

Will read later,very interesting, & presumably what is affecting the Bernese Oberland area in Switzerland, which is usually drier than the central Swiss area, but two weeks of pouring rain forecast…& people asking what to do there in the rain!!! S x

[PMRpro Ambassador in reply to Pixix]

Yes, bits of Switzerland get it in full every time, where I live though is at the edge and it tends to split to go south and/or north of us and we stay dry-ish. I have never seen our river outside the door so high for so long - it feeds from all directions except west, the direction it flows in.

There isn't that much to do in the mountains in the rain! If it is light you go out with an umbrella and ride your bike as per normal - no such thing as bad weather, just the wrong clothes. But if it is your holiday and you have small kids and nowhere to dry it all - there is definitely the WRONG weather!

[Pixix in reply to PMRpro]

Exactly! Apart from the caves on one of the lakes, I couldn’t recommend anything. You go for the views, the mountains, the walking, etc etc! We walked in bad weather at times! Agree…with kids, just a nightmare! S x

[Kendrew in reply to Pixix]

Oh my goodness! That's so unfortunate. Let's hope we can all look forward to some respite now!

[Pixix in reply to Kendrew]

hope so. We were due to go to cornwall next weekend for two weeks, but don’t think I can do it. Maybe we will try somewhere closer to home. Would be good to catch a break. Hope you do, too. S x

[Kendrew in reply to Pixix]

We're actually off to Cornwall for 2wks on Fri.... to Mawgan Porth, between Padstow and Newquay. Where were you hoping to go?

[Pixix in reply to Kendrew]

Mawgan Porth…you couldn’t make it up, could you? There was a property in St Merryn (I think it’s called), too, & that’s nearby…but yes, Mawgan Porth is where we were going to go. Ah well, maybe next year. We may manage to get as far as Devon, but waiting to talk to doctors tomorrow about David’s kidney problems& bad results! Have a wonderful time, S xx

[Kendrew in reply to Pixix]

Oh! That's really such a shame.We could have met up for a cuppa. Would have been so nice to meet you in person. Never mind.

You have a lovely time wherever you decide to go and I hope David receives the help he needs to improve his health too.

PS. My husband is also called David!

[PMRpro Ambassador in reply to Kendrew]

So was mine - it was postulated at one point it may be a risk factor for PMR ... There are a lot of spouses with that name

Apart from one night on the top of Bude cliffs, Mawgan Porth was my very first camping holiday with my parents. Added enjoyment watching planes leaving the RAF station as it was back then!

[Kendrew in reply to PMRpro]

Hahaha 😂 I'll bear that in mind if I ever need a good reason for divorce!

Mawgan Porth looks lovely, and apparently it's a good bay for water activities...my son is bringing his paddleboard and he reckons he's taking me for a ride on it!😳 There's a surf shack on the beach where I'm allegedly going to hire a wet suit and life jacket!!

I'll post photos.... if it ever actually happens!

[Pixix in reply to Kendrew]

What a coincidence! Yes, we could have! I’m hoping we may go to the South Hams area if Devon the following week, thanks for your best wishes. Lots of David’s around right now on this post! S xx

[Burroughs123]

Blimey! So sorry to hear that’s been such a bumpy ride for you lately. But you are so right to take all the positives you can get from the whole experience. Hope you have an amazing time with your family in Cornwall.

[Kendrew in reply to Burroughs123]

Thankyou.

[suzy1959]

I do agree with you about taking responsibility and self advocating, which many on this forum have had to do!

We know best when our bodies are out of kilter and need investigating. Your story may well help others to pursue their own health challenges too.

We can always learn from each other!

[Kendrew in reply to suzy1959]

Sometimes it has felt never ending, with so many scans, blood tests,appointments etc to attend. Constantly trying not to miss phone calls has been stressful as has trying to arrange so many different appointments. However, it's all been worth it in the end and anything worth achieving always requires effort and hard work.

[Bluey-1 in reply to Kendrew]

Very pleased to hear your efforts have paid off and you are now getting the right treatment. I’m in a similar position but don’t have medical insurance. As Suzy says, we know when our bodies are out of kilter. I spent a long time on the phone last week trying to speak to a human to find out where I was on the NHS waiting list for a cardiac appointment and investigations. As it was 7-10 weeks for an echocardiogram I’ve decided to pay privately as a first step in finding out about my Afib, heart failure indications from blood tests at the GP practice. I wish I’d listened to my gut feelings sooner. I have the echo on Tuesday. Weird thing is you actually have to be referred by your GP. It’s all quite a convoluted process although GP responded quickly and has provided me with paper copies of all test results / ECGs done over the last week. It’ll be my first experience of paying privately so we’ll see how it goes. I just want to know what’s wrong and what can be done about it.

[Kendrew in reply to Bluey-1]

It's such a big deal to know what's wrong asap. Current medical protocols unfortunately don't seem to consider this despite trying to find their best.

[Bluey-1]

Absolutely Kendrew. It’s actually quite exhausting trying to manage the different conditions. Saw the Endo last week who was very good. He listened to all the additional problems and thought getting the cardiac tests done quickly was a good call. A day at a time. Try not to worry but it’s the not knowing that adds stress and not feeling great doesn’t help. Thank goodness the sun has started to shine in the U.K.

[SheffieldJane]

Hi Kendrew - you were missed. I can relate to so much of your story what with all the tests and the cancer pathway etc. My diagnosed outcomes were similar. I wonder what mild Diverticular disease is? If mine is mild it is very disruptive and painful.

I am in a situation where I have a number of seemingly unrelated symptoms. I am waiting for the one that opens the box and links everything under one heading. I also feel fraudulent when many paths lead to a dead end. GPs in our surgery really seem to push you away and not allow any kind of therapeutic relationship to develop. I feel very concerned about the NHS.

You are right though, we must persist. Those who shout loudest get the attention. We just need to grow a thicker skin.

I hope you will return to us. I appreciate your warmth and wisdom. X

[Bluey-1 in reply to SheffieldJane]

I too feel concerned for the NHS Jane. Re GPs, it depends who you see but they are all overworked. It’s the long waiting list for cardiac treatment that was the shocker, don’t know if it’s better for cancer. The NHS app and access to test results is all well and good and I was referred immediately on the BNP blood result but if things aren’t followed up from then on in a timely manner it could all go so wrong.

We have to be our own advocates for our health as you and Kendrew have pointed out. In my case I’m picking up from here many people with Afib/PMR/GCA yet it was my optometrist who asked if there were cardiac links, actually looking up some research on his computer.

[Kendrew in reply to SheffieldJane]

Thankyou. That's such a lovely thing to say and means a lot.

You're certainly dealing with a lot yourself at the moment and I hope you eventually get the answers you need & deserve too.

Hang on in there. I know that's easier said than done, but there's really no other option. Doesn't matter what anyone else thinks either...they're not walking in your shoes!

Keep us all updated won't you?

Sending you a hug.

[Paulagcl]

good for you for persisting! That is not easy to do.

[moconnolly]

Peace of mind so important. I too felt like a hypercondriac with unusually frequent requests for further investigations of 'different' symptoms appearing, particularly after age 80 even if only to eliminate cause as PMR. Getting there and coping fairly well now down to tapering 2/3 mgs after couple of flare ups in the past 3 years.

[Predderman2020]

good luck - what a saga - I wish you all the best.