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Misdiagnosis

(94 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.

MadeInYorkshire Wed 30-Sep-20 19:05:10

I agree Jane10 and Tweedle24 that we are all human and mistakes can be made - I will shortly be going for my 23rd lot of surgery since 2001, and out of that 23, some were very successful, particularly the one in 2008 when my cervical spine herniated and I needed a cage in my neck .... but some were abject failures and made things worse - not out of neglect, I was very difficult ... for others I was just not listened to either, but the latest missed diagnosis of cancer is most definitely neglect! (I also think they have changed the date on my scan too, but am unable to prove that)

MissAdventure Wed 30-Sep-20 19:08:23

I knew someone who's doctor said he could see she had some extensive surgery and asked her what had been wrong.

She said "They're the lines where my tights have been!" grin

MadeInYorkshire Wed 30-Sep-20 19:19:25

MissAdventure

Brilliant!!

Took my BFF to an ear clinic as she had been suffering terribly (more neglect from the same hospital to be honest, it is awful!) So saw the Senior Registrar on duty - my friend told her that she had been given lots of drops, but that she can taste them when she put them in at the back of her throat - the DOCTOR - from the ENT Dept then said that there was no connection between the ear and the throat!!!! I couldn't bloody believe it! The next time we went they caused her to have some sort of 'stroke type event' in front of me - still unexplained, and discharged her from the clinic that day as she was being wheeled very fast on a trolley to have an emergency head CT! She still has a deaf and painful ear but has lost all faith funnily enough!!

Deedaa Wed 30-Sep-20 19:24:52

One of DD's friends is a doctor who started seeing her GP about a swelling in her abdomen. The GP kept telling her nothing was wrong so when she began to look 6 months pregnant she referred herself to a specialist. She had a lump the size of a melon removed, fortunately not malignant!

DH was very ill about 25 years ago. All sorts of unrelated symptoms and all tests coming back negative. This went on for over a year until it was finally diagnosed as hyperparathyroid which is exceedingly rare. Our GP apologised to me for nearly killing my husband but I told him he was the only one who had kept trying to find the answer. Even I had begun to think it was something psychological.

narrowboatnan Wed 30-Sep-20 21:03:06

I had to have an MRI scan of my head following a crashing fall from a horse. As I was being wheeled out afterwards I was told not to worry, my brain was perfectly normal.

Well, who was I to argue! grin

NanKate Wed 30-Sep-20 21:13:42

Thank you folks for all your feedback on this topic.

As I said initially I am not blaming the doctor for the misdiagnosis, I’m just pleased this young consultant recognised this fact and has given me strategies to cope with the present situation. ?

MawB2 Wed 30-Sep-20 21:16:33

If only diagnosis were a finite science!
I have always been fascinated by “mystery” symptoms and used to devour the medical series “House” where the principal character invariably landed on the least probable, but always correct, diagnosis!

MissAdventure Wed 30-Sep-20 21:18:41

It's a reminder to everyone to be persistent if they feel sure that something isn't right. (Says she who is too cowardly to follow her own advice)

sparklingsilver28 Thu 01-Oct-20 00:08:03

Reading some of these comments I am very concerned. Bear in mind doctors today concerned about budgets and not necessarily good diagnostic physicians as I know from my own experience.

Elizabeth1 and Epilepsy If I were you I would be very careful indeed.

My late H had rare fainting episodes from WW2. Told on numerous occasions was not epileptic because he did not have an epileptic brain pattern, and as there had not been an episode within the previous five years.

At the age of 48 and work related stress he had a Grand Mal Seizure, and taken to hospital where he was diagnosed as epileptic and placed on Phenytoin. Never had another seizure or fainting episode. At the age of 75, his then GP suggested to him there was little evidence of the drug in his blood, and "since there had not been an episode for five years" he thought it unlikely he would have another and should come off anti-seizure drugs.

My H was still driving and told his GP he was not prepared to take the risk and would not be coming of Phenytoin. His GP did not argue and my H continued to take the drug until his death. The interesting thing is, when he was dying his same GP told me, he was removing all medication other than Phenytoin which should be continued daily.

After his diagnosis my H discovered his paternal grandfather had been an epileptic all his life, and at least three first cousins on the paternal side developed it in later life. All a well guarded family secret.

Fibrogran59 Thu 01-Oct-20 02:48:06

Owing to medication i was taking for mental health problems, i developed type 1 diabetes ( a side effect of the tablets, quite rare, but happened to me ) aged 50. I checked with the doctor before i was discharged from the hospital, where i had been rushed straight from my GP surgery that i wad definitely type 1 not type 2 and he said definitely type 1. Nearly 7 years later i went to the hospital outpatients for my twice yearly check up. I was having a lovely chat to a registrar, and i mentioned about quite bad hypos i had been having. He then told me that i should not be getting hypos at all, that is something that happens to type 1 diabetics, not type 2. I told him that i had been diagnosed as type 1. The registrar checked my online file and it said that i was type 1 for sure. I had been seeing the doctors for type 2 diabetics for nearly 7 years. A few minutes later a consultant came to me and explained that i would only be seeing her from then onwards. I am just glad i didn't suffer any nasty problems whilst being seen in the wrong clinic.

EilaRose Thu 01-Oct-20 04:52:48

In January 1997 I was diagnosed with terminal cancer and not expected to live longer than 6 months, possibly sooner.

It's now Oct 2020 and it's actually me typing this reply...I didn't die afterall, nor have I had any further treatment for that inoperable cancer but I did spend up on a great holiday with money I would have normally used for other purposes.

I took myself to another doctor for a second opinion and further tests only to be told I didn't have cancer at all...BUT...who to believe? So a third doctor had the job of dealing with my fallout because by now I was a bit of a mess and not knowing who was right and who was wrong.

I came to the conclusion that the first set of pathology tests were not mine, even though my details were on all the results sheets and it really upsets me that some other person died, due to the mixup.

Of course, the doctors and pathologists would never admit the mistake, just kept saying it was impossible, but they weren't able to give any explanation and pushed me out the door. Any wonder why I lost all faith in the medical profession?

Marydoll Thu 01-Oct-20 08:01:17

Despite posting initially on my initial misdiagnosis, over forty years ago, I would like to balance it with saying the treatment and health care I have received since is second to none.
Doctors are not infallible.

My respiratory consultant realised that all was not well and I had more undiagnosed conditions, and referred me to other departments, rather than having to go back through my GP.
It certainly speeded up waiting times.

Doctors are human and do make errors, just as we all do.
It was my mother a nurse, who kept calling out my GP, saying something was wrong, until he listened.

Persistence is the key!

moonlight Thu 01-Oct-20 10:25:55

i was told by the then GP five years ago the mark on my arm that itched was eczema forward to this year new address and new GP was having blood taken for something completely different and nurse spotted it by this time it had grown slightly bigger she took a picture and showed t GP i was immedialy refered to a dermatoligst all contact made via email with me sending more pictures this was in June within three weeks i was seen by a specialist at hospital and at the same time the small lump was removed, it took sx weeks for the result to come through and i was lucky it was pre cancerous i now have a 2 inch scar on my arm but that is better tha finding later i have cancer.

PamelaJ1 Thu 01-Oct-20 12:59:29

I hesitate to post on here because the last time I wrote about my nose it created a bit of nastiness however here goes.

I went to the GP with what I believed was a Basal Cell carcinoma. I lived in hot countries most of my young life and I had already had one so was familiar with the symptoms. She said it wasn’t.
I went away and tried to convince myself that she was correct but when that didn’t work I made an appointment at our local Spire. I saw the top dermatologist there who dismissed my worries too. I must admit it was very small.
Once again I went away, then after about 4 months went back to the GP who said that as the dermatologist had said it was nothing that I would have to wait at least a year for an appointment on the NHS so I paid to see a different dermatologist. He thought that I may be right, did a biopsy and then followed up with a little op to remove the BCC. Now I have a dimple on the end of my nose. It could have been a crater!

dragonfly46 Thu 01-Oct-20 13:28:41

I was misdiagnosed with breast cancer 6 years ago. I had a scan of the lump which was outside the breast and told it was nothing. The lump changed and after 4 years I went back to the doctor to be told it was a skin problem and referred me to the dermatologist. She referred me to the breast clinic.

Subsequently I had a mastectomy and was recommended to have chemo then radiotherapy. I had the chemo which finished in March but was told the radio would be cancelled due to Covid and me being over 70.

I have just seen my surgeon today who was not aware the oncologist had cancelled the radiotherapy and is going to ask if I can now have it as she regards it as essential for me. If he refuses I will have to have another operation to remove all the lymph nodes.
I will hear their decision in 2 weeks time.
It seems the right hand doesn't know what the left hand is doing!

Marydoll Thu 01-Oct-20 16:12:22

dragonfly, I'm sorry to hear your news, wasn't as good as you had hoped for. I had been wondering how you got on with your appointment. ?

Kryptonite Thu 01-Oct-20 22:30:34

8 years ago I suddenly developed vision problems. All the lampposts down the road appeared to be bent! Optician made a hospital appointment and the foreign locum doctor didn't believe me and couldn't find a problem. Over the next 6 months the problem got worse with flashing lights, darkness and unable to see my face in the mirror with that eye. I got myself an emergency appointment, and still another foreign locum couldn't diagnose and went down the route of macular degeneration (I was 50). It was obvious the nurses there were fed up with the incompetence going on, and one of them made sure another appointment was made for me for three weeks and not three months that the doctor stated. She told me she would personally make sure the photos taken would go to the lead consultant (English) which they did. Thanks to her the problem was diagnosed (choroidal haemangioma), a first for him in many years of practice but not unheard of. I still had to wait for the result because the letter hadn't been posted, and I had to ring the consultant's secretary and insist she read it over the phone. This was followed up with a call from the consultant. 6 months was wasted, and if it had turned out to be eye cancer, as was suspected by Sheffield where I was sent, I dread to think of the outcome. Thankfully, it turned out to be a benign tumour which was treated with laser. Such a traumatic time thanks to the local hospital employing such useless eye doctors.

PamelaJ1 Fri 02-Oct-20 09:12:03

I think that we have to remember that GP’s know a little about a lot but not a lot about many medical problems.
They have to deal with so many symptoms for various illnesses that are similar and unfortunately they don’t always get it right.
The days when they simply said they didn’t know what it was but they knew someone who did are long gone.

Unhappily this thread shows that even when they do send you to a consultant it’s still a lottery.