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When should you get a second opinion? How to go about it?

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avatar YorkshireJayne

YorkshireJayne

Edited on 07/12/2021 at 07:54

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avatar YorkshireJayne

YorkshireJayne

Last activity on 19/05/2025 at 06:19

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I was brought up to respect those in authority, like doctors, police, teachers etc and so when it comes to making a complaint against one of them, I have always been reluctant. That was until this past year, when there has been one mess after another with contact (or lack of) from the local hospital. So, when it came to my daughter receiving yet another outcome of "This is what's not wrong with you, go away and come back when you're worse" kind of thing, I was determined to fight with and for her. 

A bit of background; she has suffered since she was 4 years old with joint pain and swelling, beginning with her ankle swelling out of nowhere whilst she was at nursery one day. Slowly, as she got older, her knees began to hurt, then her back and finally her neck. With one illness after another occurring, along with her suffering allergic reactions, eczema and asthma from 6 months old, her immune system was in overdrive and no-one seemed to connect the dots, from our own GP to specialists, she was dismissed as having a range of causes, from growing pains to it all being in her head! She is now 34 (a month away from being 35) and is hopefully, finally getting some answers after seeing the local MSK Triage doctor, who knew that rheumatoid arthritis and other autoimmune conditions don't always show in blood tests; but hearing that we all have some kind of autoimmune problems, as do a lot of the family, she agreed to do bloods and an MRI.

The bloods showed normal levels for everything... except the HLAB27 gene which was positive, having this gene means that she is 90-95% certain to have Ankylosing Spondylitis, an arthritis which mainly causes debilitating problems in the spine. But that was it, the MRI apparently didn't show anything they were concerned about; bearing in mind that it was sent to a consultant radiologist and not a specialist in AS, just "mild to moderate" disc bulges, stenosis (she's 34 for goodness sake!) and a small crack (I kid you not!) in her tailbone! But they're nothing to worry about apparently... So, me being a tiger mum, I Googled for local professors specialising in AS and autoimmune arthritis. I emailed him with my daughters' history, adding the report, and was shocked to get a reply half an hour later! He agreed that she needed to be seen at his inflammatory back clinic and said we needed to ask for that as a second opinion. We didn't hold out much hope of our doctor agreeing to this. 

Yesterday, my daughter received a text message from the MSK doctor; "I have referred you to Professor Paul Emery, you will be hearing from him shortly" You could have knocked me down with a feather! Finally, after over 20 years of fighting for answers, we were getting somewhere. So, we now have to wait for an appointment with his clinic, which could be next flipping December, but at least we know that she should have some real answers then and not be fobbed off with excuses like 'It's fibromyalgia, get some physio' 

So I suppose what I'm saying in all of this is, don't be afraid to ask for a second opinion. You know your body, you know that there is something not quite right, fight for answers. Do your research; and by that, I don't mean Doctor Google, I mean proper medical papers, books, articles, from recognised sources and go armed with that research when you see someone. Write a list of everything, from the slightest pain to the worst symptom, try specialists can piece them all together and give you the correct diagnosis!

If you've made it this far, well done! emoticon dazedemoticon wink

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avatar Courtney_J

Courtney_J

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06/12/2021 at 15:14

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avatar Courtney_J

Courtney_J

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Last activity on 13/10/2022 at 16:47

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1,279 comments posted | 3 in the Procedures and Paperwork group

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Hello @YorkshireJayne‍, thank you for sharing with us! What a triumph for your and your daughter! That must be such a relief to finally have some answers and to be on the path to getting her treatment.

Has anyone else had to seek out a second opinion after you had not been heard by your GP or other doctor? What was that experience like? Did it help you to get a diagnosis or treatment? How did you go about it?
@lesmal‍ @robjmckinney‍ @richard0804‍ @kellystopher‍ @Shauniex‍ @Loyell‍ @Kodimo‍ @LucyvB‍ @Sundaychild‍ @Nicwoz74‍ @GILL18‍ @Jullie085‍ @Inditherm‍ @Street0928‍ @Karina1985‍ @Melmou123‍ @Waynio3‍ @Leetaylor‍ @Sabre007‍ 

Take care,
Courtney

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Courtney_J, Community Manager, Carenity UK


When should you get a second opinion? How to go about it? https://www.carenity.co.uk/forum/other-discussions/procedures-and-paperwork/getting-a-second-opinion-4441 2021-12-06 15:14:29

avatar lesmal

lesmal

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06/12/2021 at 17:31

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avatar lesmal

lesmal

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Last activity on 19/05/2025 at 10:03

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At the moment I haven't asked for a 2nd opinion but am very close to doing it. I've been under a Neurologist for 4 years now and tried 5 different epileptic medications, none of which have worked or made any difference.

I have a teleconsultation with my Neurologist tomorrow, after waiting for 6 months, and will see what his next plan of action is. Due to COVID-19, I haven't seen my Neurologist face to face since February 2020, almost 2 years now.

I'm extremely disappointed with the service given and if nothing constructive comes of the telephone conversation, then I will be discussing it further with my doctor. 

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Les


When should you get a second opinion? How to go about it? https://www.carenity.co.uk/forum/other-discussions/procedures-and-paperwork/getting-a-second-opinion-4441 2021-12-06 17:31:33

avatar YorkshireJayne

YorkshireJayne

07/12/2021 at 08:05

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avatar YorkshireJayne

YorkshireJayne

Last activity on 19/05/2025 at 06:19

Joined in 2021


104 comments posted | 3 in the Procedures and Paperwork group

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@lesmal Telephone consultations are the bane of my life! I was diagnosed with lymphoma in March this year and out of the 6 or 7 times I have spoken with a consultant, only 2 have been face-to-face. I understand the implications of the pandemic for someone with a compromised immune system, but something as serious as cancer, you'd think that it would be more important to actually see the patient. 

I also have pain block injections into my neck (unrelated to the cancer but due to autoimmune problems) and haven't had them for almost 3 years now, nor seen the pain specialist. I know it's all to keep us safe from the virus, but sometimes you just need to see someone rather than just speak to them.

 

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Life is for living, do it, no matter what!


When should you get a second opinion? How to go about it? https://www.carenity.co.uk/forum/other-discussions/procedures-and-paperwork/getting-a-second-opinion-4441 2021-12-07 08:05:31

avatar Shauniex

Shauniex

20/12/2021 at 14:04

avatar Shauniex

Shauniex

Last activity on 29/06/2022 at 09:29

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2 comments posted | 1 in the Procedures and Paperwork group


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I have yes, it was horrible. I eventually got transferred to a specialist who is there for my problems. And he said yes after almost a year telling my GP that my throat needs looking at, I have had the surgery!!

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Never give up, keep going


When should you get a second opinion? How to go about it? https://www.carenity.co.uk/forum/other-discussions/procedures-and-paperwork/getting-a-second-opinion-4441 2021-12-20 14:04:03

avatar YorkshireJayne

YorkshireJayne

21/12/2021 at 09:21

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avatar YorkshireJayne

YorkshireJayne

Last activity on 19/05/2025 at 06:19

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104 comments posted | 3 in the Procedures and Paperwork group

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It's taken us 5 years or longer to finally get someone who actually listens! My daughter is now waiting for an appointment with a professor who specialises in her condition and has agreed that she needs to be seen after reviewing her scan results. So progress at last.

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Life is for living, do it, no matter what!


When should you get a second opinion? How to go about it? https://www.carenity.co.uk/forum/other-discussions/procedures-and-paperwork/getting-a-second-opinion-4441 2021-12-21 09:21:27

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