Interesting week.: The last time I posted I could... - LUPUS UK

LUPUS UK

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Interesting week.

johare profile image
12 Replies

The last time I posted I could get hold of Flecanaide for heart arythmia. My GP refered me back to a private cardiologist I had seen three back! I sorted it myself by speaking to the hospital pharmacy with a temporary prescription and privately paying to see a cardiologist at the London Bridge where my rheumy is. Things are never easy. The day I'm going Tuesday, my boiler dies. British gas called. My cardiologist decides he wants to wean me off the flecanaide. Do a echo and seven day ECG and decide whether to ablate my node or represcribe. I again explain about healing problems. Come to a cold house.

Wednesday have bladder scan and cystoscopy following eighteen months of blood in urine. Gp ignored this. Come home to cold house ( day two British gas). Told I need gynae referral.

Thursday informed I need kidney ct. I can't as I'm allergic to contrast dye. They argue despite not doing a liver ct before. House cold ( day three British gas).

Friday collect old uterine scan CD to compare told ct will be given now without contrast and to attend Saturday morning. House cold. ( day four British gas).

Pain is much worse when you're cold and I am less tolerant.

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johare profile image
johare
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12 Replies
Barnclown profile image
Barnclown

Oh boy...such a lovely week (not) 😏😜😉😘.

V much feeling for you ❗️❗️❗️My version is somewhat similar but the level of pain & organs involved not high/seriousness enough to be a real downer:

Just before Christmas came the onset of my usual persistent& recuring infections: this week finished 2 weeks on coamoxiclav for UTI + pyelonephritis but kidney pain is lingering as are widespread peritoneum symptoms . saw dermatologist about spooky patches: hooray not sinister. Plumbing breaks down: no hot or cold water upstairs & complications downstairs until some time next week. Back again to local hospital for ultrasound scan of total abdomen (inc internal wand scan): no obvious signs explaining persistent generalised peritoneum pain that set in early october....& on & on: at least it's not raining here this morning

🍀 Coco

Alison-Brown profile image
Alison-Brown

Bloody nora Jo. You've certainly had a piss pore week! Makes my little aches and pains seem inconciquencial. I'll keep my fingers crossed for you for this morning. Let us know how you get on and I hope the gas man turns up soon.

Take care X

A

johare profile image
johare

I love heat. Fifth call out, three and a half hours later a night with heating. Up at six thirty to drink enough for ct. They still tried to inject contrast in the arm with the red allergy band on. Very different to the very good experience at the urology department Wednesday. And so to wind down the heart meds. Bring on those arrhythmia.

Hope your "downstairs" is sorted soon Barnclown.

Barnclown profile image
Barnclown in reply to johare

Good luck🍀🍀🍀...hoping to hear how all this goes

Cann profile image
Cann

Yes, Johare, the cold really affects types like us.

Wrap up warm; I wear trousers with leg warmers under and two pairs of socks and a woolly hat even with the heating on low.

I can't stand the heating too high either, it dehydrates me and I feel dizzy and get pain - if anyone comes to the door, I say I have just come in from gardening, what a life!

I do just about cope though.

I have had arrhythmia, tachycardia, irregular heart beat through-out my life and funnily enough just as I was opening my mail before reading your post, I had it again - just eaten and I realised I was slouching over the computer.

As soon as I straightened my body and posture, it went - crazy, eh?

No wonder the doctors have such a difficult task with us.

I have had all the tests - echo, ECG, etc. and although they showed irregular beat and extra beats - they didn't come to a conclusion as to why.

I was told I needed a gynae referral and they did a hysterectomy - almost killed me and then all my hair fell out.

I found out after I didn't need it - it was my bowel that was and is the problem, but I can't take any more surgery now or drugs - have been totally messed up by the conventional system - every action has a reaction with my body.

So beware and try to sort problems yourself if you can.

I also had a bladder op and that doesn't function as well as it did before either.

I ended up with adrenal exhaustion, but have been healing naturally and I don't trust any of their knowledge now - sorry to sound doubting, but I have had plenty of experience to do so.

I wonder what they do actually know about the female body - not as much as my body knows I have concluded.

Hope your boiler is back working soon - sending warming energies to you!

vaderviper profile image
vaderviper in reply to Cann

Didn't realize your Medical system was such a pain the the a-s. I am a retired Dr. in the USA. I am not going into any of your other problems, but your irregular heartbeats should be diagnosed and treated. Most people have palpitations which are often not even noticed by the patient, but arrhythmia and tachycardia would concern me. You are not describing trigeminy or bigeminy (most people complain of these occurring in the evening), but possibly atrial fibrillation (don't know without examining you). There are a few other diagnoses it could be, but my concern would be if you do have A-Fib as that will not cause a heart attack but could cause a stroke.

BTW: a one time ECG may not reveal A-Fib.....you need too wear a heart monitor for 1 week to pick up any chronic abnormalities. Please go back to your Cardiologist and ask if you could wear a heart monitor for 1 week to determine what is actually going on with your heart (it is possible it is nothing serious and benign.....just annoying)....I always prefer to be on the safe side with my patients.

Dr. S

Cann profile image
Cann in reply to vaderviper

Thank you for your response to my post and for caring.

Like all walks of life there are good practitioners as well as bad.

Many have had good treatment and results, but for some reason that is not the case for me, since 2000 anyway, apart from the homeopathic treatment from doctors at Bristol NHS Homeopathic Hospital which has now closed, unfortunately.

The doctors there were conventionally trained as well as in complementary treatments.

The NHS has decided to stop providing homeopathic treatment to patients; the Chair of the Commons Health Select Committee believing in the ignorance of a so-called ‘Good Thinking Society’ who state there is no scientific proof that homeopathy is anything other than a placebo effect when there is so much evidence if they choose to look.

This form of treatment works for me whereas invasive, toxic treatment does not.

You would need to know the full story of what happened to me, which my GP does.

You talk about the irregular heartbeats as if they are to be considered in isolation. However, I know from my experience that all systems of the body are connected and to treat a part in isolation can be dangerous for some patients, even fatal as it nearly was with me with the hysterectomy and what followed which obviously you don’t know the full details.

I have many allergies now including chemicals and foods and it is complicated.

My GP agreed that the conventional system/NHS is very poor at recognizing and treating patients with allergies. Tachycardia is now an accepted reaction of an allergic response.

He knows how sensitive I am – he even referred me to an allergy specialist assessment, but this was refused by the CCG that make the financial decisions.

I will continue with the homeopathic medications that I have and go with what feels right for me.

Continued allergies can affect the heart, but it is getting to the root of the problem rather than treating one area and possibly putting the body in even more stress than the treatment of 2000 did.

My body has been healing ever since and for the moment I feel it is the right way to go. Complementary practitioners saved my life after 2000 and it was certainly a learning experience.

A good book for doctors to read is ‘The Field’ by Lynne McTaggart. Perhaps you have read it. If not you may be interested.

I will bear in mind what you have said and thank you again for caring.

vaderviper profile image
vaderviper in reply to Cann

You are correct when you say you have to get at the root [cause] of the problem. In good medical practice you never treat the symptom without first determining the cause (that's why I stated I don't know without examining you). You must empirically rule out one cause after the other, unless of course if an ECG does indeed show what is going on with the heart. Maybe you are not aware, but in the USA all Cardiologist are required to be board certified in Internal Medicine.....which requires a minimum of 7 or more years medical training. If your tachycardia is caused by allergies, then a 10 day dose of prednisone should prevent any attacks of tachycardia.....if it does not, your tachycardia is not caused by allergies. I think everything related to the heart should be ruled out 1st, i.e. high blood pressure, atherosclerosis, heart failure, cardiomyopathy, heart valve disease, infection or tumors etc.

However you know any of the following can cause an increased heart rate: tobacco, anemia, exercise, caffeine, alcohol, med side effects, imbalance of electrolytes and hyperthyroidism just to name a few. If it were me examining you I would do a complete history, workup and tests to determine the exact cause of your irregular beats and/or tachycardia. Were you ever told if you have atrial or ventricular tachy? I will assume you know many irregular beats are "normal" and a heart rate of up to 100 is normal for some people. I would not have enough space here to go into everything concerning your symptoms, but I believe it is well worth the complete workup to define the cause to make sure they are benign (most irregular beats are).

Dr. S

Cann profile image
Cann in reply to vaderviper

I cannot take any drugs now - they don't work nor do supplements - a practitioner well qualified, experienced and recommended said my body does not know what to do with supplements or drugs. I found that out for myself after 2000. We are all different and cannot all take the same foods let alone drugs or supplements; this is why so many die every year under the conventional system - a lot are saved, but I don't wish to be one of the thousands who die. I nearly was and it has taught me a big lesson. Lifestyle is so important. I don't now and never did smoke, but there is a lot of passive smoke since the UK banned smoking in shops - hence, outside shops and restaurants, etc. is intolerable at times and affects me - should be banned completely. I had tests for anaemia - as have been on and off through my life - not now since changed my diet from eating any grains - doctors suspected crohn's, but I was too ill for a sigmoidoscopy; coeliac is in my family, I do my best to exercise - playing table tennis this aft. don't drink coffee or tea, don't drink alcohol stopped over 20 years ago as had choking fits after, don't take drugs, do have a thyroid problem - Hashimoto's thyroiditis which I use hom. med for as levothyroxine contains lactose that I am allergic to and actually it changes from hyper to hypo and back, so difficult to take drugs for.

You sound a good doctor and it would be good to have you as mine, but unfortunately, my experience is not good with doctors I have seen, and I will not risk my life seeing, one who could harm me, but I will keep all you have said/the information incase I need it and it has been most helpful, so a big thank you.

Just one example of a gastro-enterologist I saw - I was given a hysterectomy when I was told I needed a bowel repair - when I told him, he laughed and said, 'Oh, oh, oh, so you were given a hysterectomy instead of a bowel repair, oh, oh, oh, I could have smacked his face, but I just walked out and said he couldn't help me. I did see another recommended by my lovely friend who died of ovarian cancer and he said he wouldn't even risk giving me picolax in my state of health let alone risk a sigmoidoscopy, he suggested I carry on the complementary and natural route - a wise doctor as I was given little hope in 2001 and I am still here even if I do have some health problems. Take care and thank you so much.

johare profile image
johare in reply to vaderviper

Thankyo, yes this is six years down the line with heart symptoms. I'm an ex nurse so on the case. It all started with atrial fibrillation. Hospitalised to stabilise it, but left with some arrhythmia and ectopic beats. Been pretty stable on Flecanaide and Bisoprolol but Flecancainde hard to get at the moment. So need to be reassessed. All the rest is ongoing Lupus stuff. I had a reveal device for eighteen months. Next Thursday echo and seven day ECG.

johare profile image
johare in reply to johare

Also like to add all this was because I paid privately. Probably would still be waiting.

Purpletop profile image
Purpletop

Everything is grim without heat and hot water, let alone when we have to steel ourselves in the face of yet another hospital, another scan, more radiation, more prodding. Each day another piece of our body. So much so that all we want to do is go home and hole up on the sofa and be left alone. Cold makes it all so uncomfortable. How much more can we cope with??

Good luck with all your scans etc.

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