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(93 Posts)
NanKate Wed 30-Sep-20 07:05:38

Very odd day yesterday saw the Rheumatologist about my Polymyalgia which had been diagnosed by a doctor 4 years ago. The very knowledgeable young consultant said I did not have this illness at all and has shown me how to come off the steroids.

If I hadn’t had this consultation I would have gone on merrily taking steroids that I do not need !

I don’t blame the original doctor as I had symptoms which were similar to Polymyalgia but the consultant said she believes that the nasty norovirus I caught caused the initial problem.

These viruses, such as Covid, can have nasty long term effects.

I think the point of me posting here is to say don’t always believe what you are told by the doctor.

Whitewavemark2 Wed 30-Sep-20 07:08:54

I can second that!

Told I didn’t have breast cancer by GP 3 times until I insisted I was referred and pay for the privilege.

Diagnosis - breast cancer. Very early stages.

Oopsadaisy4 Wed 30-Sep-20 07:43:02

Nankate whilst it’s brilliant to be told that you don’t have Polymyalgia, did you have any tests to prove that you don’t?

If you don’t have it but still have the symptoms how will they manage it? Or have they just told you to get on with it?

Elizabeth1 Wed 30-Sep-20 08:02:19

I’ve acquired a recent neurologist assessment who states very clearly after reviewing many years of historical paperwork that he believes there’s no real evidence to support my early diagnosis of epilepsy. He said I could possibly be taking an anti epilepsy pill for many years to come and not need to. He things by all accounts I’ve been having simple faints possibly due to low blood pressure. I’m so pleased he’s going to meet up with me to discuss removing the anti epileptic pill I’ve been taking for over 40 yrs. someone at last taking an interest when my own gp hasn’t she’s been paid to provide me with an annual epilepsy review what’s happened there may I ask ?

Elizabeth1 Wed 30-Sep-20 08:06:59

Whitewavemark2 so pleased you’ve caught this in the early stages there’s lots to be said for detecting early signs of cancer and great cures. Lots of love flowers

Sarnia Wed 30-Sep-20 08:17:44

As a sufferer of paroxysmal atrial fibrillation I have seen many medics over the 30 years since first diagnosis. Consequently I have taken a cocktail of different medications, mostly beta blockers, in that time. 6 years ago I saw a new cardiac consultant at my 6 monthly check-up and being new to him he took the time to read my notes. He arranged some tests with the result being that I am allergic to beta blockers! He took me off all heart medication straight away. My heart rate reverted to normal beats per minute and although I still suffer from PAF, in between episodes I feel much better than I did. 30 years of taking unnecessary medication at a cost to myself and the NHS.

Whitewavemark2 Wed 30-Sep-20 08:27:35


Whitewavemark2 so pleased you’ve caught this in the early stages there’s lots to be said for detecting early signs of cancer and great cures. Lots of love flowers

Yes absolutely.

I think that the first instinct is to ignore it in the hope that it will go away, especially if you have a clinician assuring you that all is well, but trust your instincts, and honestly the earlier you can detect it the less invasive procedure you will have to endure, and the greatest chance to remain in good health.

Whitewavemark2 Wed 30-Sep-20 08:30:05

I think that really the lesson to be learned is, that we must as far as is humanly possible, be proactive in looking after your health.

Sparklefizz Wed 30-Sep-20 08:31:37

NanKate I'm very pleased to hear that you don't suffer from Polymyalgia. You must be relieved, although confused by the whole thing.

Are you supposed to go cold turkey with stopping the steroids? They do have side effects so it's possible that other symptoms you've been suffering could be down to the steroids and you will notice a big improvement once they are out of your system.

I don't trust doctors at all and have come unstuck many times with having a number of health problems over the years so I double check everything they say. Thank goodness for the Net.

Only last year a GP diagnosed a large swelling on the ball of my foot as Arthritis, said it was likely to happen with the other foot, that there was no real treatment, and told me to buy some quality trainers to help me walk. I joined a Facebook group for Arthritis and learnt a lot, including that it might be Bursitis so saw a different doctor at the practice and asked him if it could be that.

It was Bursitis and while waiting for an appointment with the hospital MSK Dept, I treated it with homeopathic Rhus Tox & Ruta Cream just to east the pain, but to my amazement it also shrank the swelling down to nothing! Problem solved!

I hope you feel much better once you stop the steroids.

NanKate Wed 30-Sep-20 08:36:58

Sparklefizz sent you an email.

Have to go out shortly so will reply to the other useful comments and questions later.

Liz46 Wed 30-Sep-20 08:44:15

I have asthma and started to become worse and I felt ill. GPs kept increasing my asthma medication but I knew something was wrong.
I went to the surgery's website and looked at the GPs' interests. I found one who knows about lungs, made an appointment with her and said 'I am ill and losing weight without trying'. She looked away from her computer and looked at me. She arranged a CT scan and all hell broke loose! I was put in the care of an expert respiratory nurse who came to my home to see me. (I have no proof but I think she was checking that I do not live in a smoky, mouldy house.)
In the end it was discovered that I have/had a form of non-contagious TB and had to take three AB every day for 18m months.

Sparklefizz Wed 30-Sep-20 08:49:37

Liz46 Shocking, but sadly I am not surprised.
I do hope you are feeling better now.

Marydoll Wed 30-Sep-20 09:15:07

Kate that must have been a shock for you! I hope you begin to feel better, without the steroids.

A similar thing happened to me Lins. I was at university and developed a hacking cough, which didn't respond to any treatment. I was given cough bottles, antibiotics and had lots of allergy tests and x-rays.
I remember a doctor at the local hospital telling me it was all down to nerves and to give myself a shake!
This went on for a year and became progressively more unwell, eventually weighing only six stones.
On the day I got married, forty three years ago today, I had cracked ribs, due to the constant coughing.

My GP decided to send me to a large teaching hospital in Glasgow for further investigations.
I had lots of tests and when I went back for the results, I was told that I was being admitted to hospital.
I was newly married and spent six weeks, seriously ill in the high dependency ward.
Most of the time, I wasn't really aware of what was going on and my husband and mum were told to expect the worst.😢

I will be ever grateful to my respiratory consultant, who helped me back to reasonable health.
It was massive doses of steroids which literally saved my life.

The moral is, if you are unwell and are being fobbed off, ask for a second opinion.
I started off initially as a wee mouse and came out of that hospital, a lion.

Ellianne Wed 30-Sep-20 09:24:15

I'm pleased people have found the causes of their illness. It is horrible when no one can give you answer. I am three years down the line and just get passed from doctor to doctor for consultations but no clear diagnosis or treatment. Eventually you give up.

TwiceAsNice Wed 30-Sep-20 09:32:18

Nowhere near as bad as these stories but after 4 years diagnosed with diabetes type 1 I reversed it to pre levels for nearly two years. I have just persuaded my GP to let me not take Metformin and they will repeat my blood tests in 3 months. They keep trying to put me on BP medication because white coat syndrome makes it read high at the surgery so I am in the process of doing 2 weeks readings at home to email in ( they are fine) I feel it is a constant battle at the surgery not to stay on medication forever. I have also come off my statin and they don’t like that either

BlueSky Wed 30-Sep-20 09:32:28

This is rather worrying, as much as we should trust the doctor, they are human and if we don’t feel confident in a diagnosis, we have the right to seek a second opinion. I’ve had a few instances like many people, but luckily nothing as serious as other posters. I guess our health is ultimately in our own hands.

shysal Wed 30-Sep-20 09:37:23

I enjoyed the Diagnosis Detectives TV programmes with Michael Moseley. It followed several patients who had gone for years with undiagnosed problems. A panel of consultants who were very knowledgeable got to the root of these conditions together with 'joined up thinking'.
I hope you will benefit from the new diagnosis, NanKateflowers, I remember we were diagnosed with PMR at around the same time. Mine has gone, only to be replaced by Rheumatoid Arthritis.

Theoddbird Wed 30-Sep-20 09:50:12

I nearly died because of a miss diagnosis in 1976 I went to the doctor because I was bleeding continually...had been for a month. He did not examine me and said it was because I had come off of the pill. He gave me iron tablets. A couple of weeks later I was laying on floor in agony and my husband took me to his doctor at a military facility where he worked. I was rushed to hospital and immediately into surgery. I had an ectopic pregnancy. The surgeon said a couple more minutes and tube would have burst and I would have bled to death. I did report the doctor but it came to nothing.

Barrygirl Wed 30-Sep-20 09:52:09

Diagnosing illness is not straightforward: for many issues there are no tests. Doctors are not born with a magic wand which enables them to "see" what you and they are dealing with! Granted, some doctors could take more time to understand but since the rules expect GP's to deal with with each appointment in ten minutes ... and have trebled the paperwork it is hardly surprising that mistakes take place.

NotSpaghetti Wed 30-Sep-20 09:59:05

I was told my small breast lump was early cancer by the consultant at my local hospital. I went through the usual tests and he said surgery was necessary and needed to be done ASAP.

I got a second opinion from another consultant who had done a friend’s mastectomy. After the same tests he laughed and said it was merely a blocked mik duct and explained why.. He took a biopsy “to put my mind at rest”. It was a blocked milk duct.

I did feel very angry towards the first consultant as I could have had unnecessary surgery. How many others would have just gone forward with this?

lemsip Wed 30-Sep-20 10:00:00

I was diagnosed by a Dermatologist with Psoriasis being the cause of my weeping spots on legs arms and back of hands. He wanted to put me on Methotrexate, Thankfully I declined and used various other skin remedies and it cleared up never to be seen again. I could have well been taking Methotrexate still, thinking that had cured it.!

Nannynicedrop Wed 30-Sep-20 10:01:50

Yes indeed...between 2010 and 2011 had various problems and visited numerous doctors. I was told to go away, nothing to worry about. In 2011 we moved to France and in the following years I received treatment and surgery – hysterectomy, partial bowel removal, facial tumour removal and partial kidney removal. All cancer and spotted by the excellent French health system. I think I am a lucky lady.

lemsip Wed 30-Sep-20 10:03:13

My sister in law was diagnosed as having ibs. eventually having a scan, ovarian cancer was diagnosed and she was dead in two months. She should have been scanned to eliminate other causes first!

LJP1 Wed 30-Sep-20 10:05:23

DH diagnosed with Diabetes type 2 - stats test on effects of metfomin & glucloside & reassessment - type 1.

Heart failure as asthma. I and our GP knew but specialist said .... Heart attack settled the matter!

Mohum Wed 30-Sep-20 10:06:00

Took 5 years of persistance to diagnose my brain tumor then a week to removal of it's