Was seen very quickly for bp and weight...bp always very high at any surgery......it was 180/80......it:s 150/70 at home...Anyway was then called in to see the doctor.......she talked about my bp and dizziness/balance....and everything according to her is because of steroids!......she more or less said they are poison....when we discussed fatigue......she asked if I know about adrenaline!. as if!......she said that's why I have fatigue, and it's my fault not lowering.........after my lecture, I said the GP said you would probably refer me to Neurology....she said why would I do that??......to which I replied, because you must have seen I have swollen blood vessels in the brain......no I haven't got that information....to which the nurse said, you have it's here!.......she said they would be swollen because of my cholesterol is high 6.1.....(have just started statins).....so no need to!.....didn't come out of there reassured!! It was a oneway conversation......
Then went into physio....brilliant man, plenty of advice, not condescending!!
So yes, I will try lowering again after Easter weekend.......must lower the poison!!
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Oh Longtimer! I would have despaired or been dismissed for rudeness. A drip and a bully. I am glad you got your little sunbeam, that’s what keeps us going. None of this is your fault!
I too have done the joint pain program at Nuffield.....brilliant...also have kept up the reduced membership to do pilates...it does help with mobility and stress.
I did the Joint Pain course. It was the best thing ever, because it got me doing some exercises and meeting new people who had much more severe health issues than I did.
I joined the gym at their reduced rates after the course ended and I am still going twice a week now, just to swim in their lovely warm pool.
Nuffield Joint Pain course has helped me so much. I recommend it for anyone with PMR.
It was disappointing.....I felt like I was the only person who has ever been on steroids as long as I have and still on 5 mg, I was told last week to write things down before I go......no point with her!....
It certainly was, very dissapointed, spoke to me like a child.. . even said you have Osteoporosis because of the steroids so lets hope you don't have to stay at 3 mg and make things worse. She said what are you taking for Osteoporosis I said I have infusions, she said are you sure?.... then looked in her notes and said, oh yes!......by then I 'd had enough!....She suggest ed a different dose every other day.. ... no, will do it my way!
I'd contact the person whom referred you to this clinic immediately.Tell the persons Secretary that you need to speak to them ASAP because of the inappropriate treatment you received from Dr.XXXX and that they did not organise the referral to Neurology or do further tests but spoke to you unprofessionally, and without properly assessing your notes and medical history first based upon their preconceived prejudices .
Explain that in the circumstances you want to request that you are referred as an urgent case to Neurology by them, the more appropriate Department in your case despite your age , to be assessed and want to speak, by phone, to the Consultant to confirm that this has been arranged.
Explain , you don't want to have to make a complaint but obviously it will become necessary to contact the Chief Executive Office if you aren't referred on for an assessment in the appropriate Department because the treatment you received and judgement about steroids use was offensive and unprofessional.
You do not use PALS , the Chief Exec is the one you complain to and you scare them with, they do not want to be under that radar and reports to them get recorded in the Department records as well as individual employee reports, so even if you just mention it politely they usually jump to attention.
I sat in on an initial cardiac appointment with my daughter last year in Cardiology which was pretty much as bad , preconceived prejudices from beginning to end , they didn't even have the notes that showed she had probably had a minor heart attack and basically told her young women like her don't get heart attacks , basically being very condescending and blaming it all on her mental health ( her anxiety and mental health crisis is caused by her heart issues and pain not the other way around). If she hadn't had me with her and understood how doctors can be from my years of experience that Consultant could have sent her mental health back six months and possibly even towards thinking suicide was the only way out. which was how she'd felt just as after the heart attack had added to her pain.
We told the Nurse we would be organising a second opinion and rang Cardiology the next day to do it. They couldn't have been more helpful because we had been treated badly my daughter was seen again within the month by my Cardiologist whom actually rang on the same day of the call to confirm tests and to begin her on appropriate medication that day so he could see how she was responding when he met her.
What doctors don't seem to be willing to address is that even if long term steroid use is partially responsible for increasing additional symptoms the way to treat this isn't only by helping the patient to taper off the steroids itself but to make that easier, and prevent further deterioration and risks by also treating the side effects themselves by testing for damage , giving medication if required, and advising on pacing and self care plus arranging appropriate physical therapy.
Unfortunately, in the UK you must research and push for treatment of this type within your local area and doctors seem to only be interested in hitting the immediate issue with a sledgehammer and not preventing the chance of it causing further problems with your other conditions or general health by doing that reactive treatment.
Hope you get something sorted out as this was totally unacceptable, take care , Bee
This is such a useful post Bee - this is a problem that is getting worse as the NHS slumps but without complaints, it will never change. MrsNails' daughter also had a heart attack while pregnant - for a member of a cardiology department to tell someone young people don;t get heart attacks defies belief - they can and do these days for various reasons but certain preexisting condition predispose it as you well know.
It is a known phenomenon:
"Heart attacks are on the rise in patients aged 20-30 years old
Not long ago, heart attacks were primarily a problem faced by older adults. It was rare for anyone younger than 40 to have a heart attack. Now 1 in 5 heart attack patients are younger than 40 years of age.
Here’s another troubling fact to highlight the problem: Having a heart attack in your 20s or early 30s is more common. Between the years 2000-2016, the heart attack rate increased by 2% every year in this young age group."
And while there are many avoidable factors - obesity, smoking/vaping. substance abuse, stress - it is not the place of a member of cardiology staff to judge that in an unknown patient in front of them. They are factors - but not in everybody, especially one with as interesting a family history as yours ...
Believe me , from the moment I walked into the room as her advocate I had to bite my lip and sit on my hands to stop me punching him.That Cardiologist was a test case example of every way not to treat a patient.
I knew which way it was going to go when we walked in a side room with no computer and he said, " Oh , Hello, It's so nice to see you I don't often get to see people whom look so healthy!"
Yes , she looks healthy because she looks after herself and is young but it doesn't mean she isn't coping with a group of serious illnesses on a daily basis ....You'd have thought the walking stick and breathlessness might have been a hint!
My daughter has the same cardiac issues as me but at a more severe level and sadly at her young age of 21.
She had tried to commit suicide, not because of Anxiety but because after months of constant pain and chest symptoms she just didn't feel like she could cope with them anymore.
She was waiting for her first Cardiology appointment at the time of the attempt.
It was in Emergency Recovery after her attempt that they did the blood tests , ECGs and an Echo and the senior cardiologist on call kept her in Resus for 36 hours to keep testing because the results showed that it was 80%+ likely that she had had at least one minor HA if not a sequence about a month before. This was why her Cardio appointment had been pushed through to do the added tests to confirm her issues and get her on the right medication after she'd had a little more time to recover from the suicide attempt but before another HA could occur.
There are so many juvenile and adult illnesses and genetic conditions which include cardiac symptoms and syndromes as part of their complex problems , and if left untreated these can cause a serious heart event.
Until you have been diagnosed with them , and if you are usually asymptomatic, you wouldn't know you have the risk.
My daughter, like me , has EDS , Fibro, POTs , Dysautonomia with Tachycardia she also has M.E/CFS but was in the process of getting her diagnosis to get access to treatment at the time and even just a short period without treatment when these had flared had caused a heart attack.
Looks are deceiving and no doctor should base their medical opinion on what you look like on the outside.
Oh , forgot to mention he also said that healthy women under 40 whom look after themselves don't need to be worrying about getting tested for heart problems and having heart attacks either!!!!
I trust his superiors have disillusioned him of that load of rubbish. Definitely needs retraining though at that degree of arrogance probably a waste of time.
To be fair - HEALTHY women probably don't, but she isn't healthy is she and had he looked at her history, he would have known that. SInce the senior on-call cardiologist had identified the problem quickly enough in the ED ...
Terrifyingly he is one of the Senior Consultants! In his late 50's and apparently well respected in the Department, which is another lesson for us to learn , just because someone has a good reputation and years of experience doesn't necessarily mean that they don't harm their patients with tunnel vision and old preconceived ideas.
Luckily, she's under care with my guy , as we requested him when we complained, whom doesn't have much experience of our condition , apart from treating me, but was open from the very beginning to listen to me , look things up and prescribe and try the more up to date treatment options.
Similar age and ethnicity, similar experience and years as a Consultant but a totally different attitude to looking at the broader needs of his patients and willing to understand that he may need more outside advice with rarer conditions.
She also sees the Physio I'm working with to create better physical therapy for people with Dysautonomic health issues , so we are hoping she is safe from now on.
You mention ethnicity - I was wondering about that. I'd far rather have a newbie I can "train" so we can explore together than the bigoted type who think patients know nothing.
Terrible story for you and your daughter.....can't understand how they can be so arrogant with sick patients!!....Like you after several years I found a wonderful Rheumatoligist whose mantra was discussion, he listens/ discusses then come to an agreement on treatment.....hope she continues to improve....A couple of years ago when I was seeing him there was a questioneer come round about Health workers, it asked for nominations, so I gave his name. Later he thanked me for that, I told him you are what we expect from a doctor, but we are very short of them!....he knew hat I meant because of past experience!....
Thanks , it was bad but our first thought was imagine what it must be like for a first time patient or someone whom doesn't know how the system works like we do. They'd have been sent off in tears after no checks feeling like a hypochondriac and potentially being a ticking time bomb. I hope that Rheumatologist continues to show how good they are and listens to what happened to you when you ring up and sorts out the Neurology appointment they should have sorted out in the first place. You don't want to feel stuck at square one again.
Are you getting another treatment for other pain or conditions alongside the steroids?
I am waiting for a pain clinic appointment.....have Osteo in lower back, and other places!...my biggest problem is not tolerating medication!....I will certainly make known to GP and others, yesterdays experience.....we could all do without this when battling illness. It reminds me of years ago, my mother-in law thought doctors were gods!.....the doctor yesterday would have loved her.........not me ....Thank you for advice....
That's exactly what I said, I felt like a drug addict. She even said did you p ay for the brain scan? I 'm sure she was thinking I was making it up.....I said no!....my GP was concerned when I visited her of my balance problems and dizziness.....Not surprising anymore to see an arrogant dismissive doctor....had my share in Rheumatology, lucky to have found Max, just like Blearyeyed, it makes so much difference......
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