How long do you persevere?

[Nana]

I wondered if it's just me being pedantic, but I wondered if any of you ever question a Consultant/medical person when you are told there is nothing more to be done? Then you're discharged from a particular clinic or sent away from the Dr's appointment without a resolution. It happened to me this morning at the Gastro' Clinic. Because my colonoscopy was clear & that I'm putting on weight rather than loosing it, the Consultant said there's nothing more he can do. I asked if I could be tested for food intolerance maybe? He said I could have a blood test for Coeliac disease as a departing gesture. I wondered how long you would persevere?

I seem to spend my time asking for second opinions & almost begging for further testing to try to find a diagnosis, solution to my illnesses. I've been fighting over a year now with a hospital over my cataract operation. I wrote to my local MP & she's been a wonderful support.

Do you settle first time you're told something by a medical person or do you question & fight for your rights as a patient?

[Gemini]

I would always question something if I really believed not enough was being done Nana. Having said that, I know how difficult it can be when you are being told there is nothing more to be done.
I support the NHS, and wouldn't want the American health system. I do notice however,how many more investigations American friends get, because they pay for it. Too many, in my opinion, but at least they don't go away feeling that they haven't had everything investigated!

My OH was told that radiotherapy was only to control pain, so as her back pain wasn't linked to her tumour, she didn't need any. I truly wanted to hit him. We complained, asked to see another consultant, whose first words were ' I have booked you in for a 2 week course of radiotherapy' Who knows if she would still be here, 8 years later, if we had just listened to the first consultant.
It's a tricky one though Nana. Test after test with no conclusive results, is in itself stressful and draining, isn't it?

[Daisy]

Nana - I'm very fortunate in that I've never been in the position of needing to press for further tests and being referred on to another specialist, but if I thought I did need further treatment I would definitely press for it.

I would certainly ask to be tested for Coeliac disease, and if that still doesn't give any answers ask to be referred to a dietician or an allergy clinic.

[Enfys]

Difficult one, Nana? Like Daisy I have not been in that position but I believe that if we are not happy with results/diagnosis etc we should go,ahead and ask for further investigation. After all, we know our own bodies and we deserve the best treatment. So go ahead with the further tests and maybe, as Daisy said, ask to see a dietician as well. I also think it depends on the Health Authority where you live, we have often compared the treatment we get to friends who live in another part of the country. I hope you get the help you need, good luck xx

[Bizzy Lizzy]

I was speaking to someone I know the other day and she said that it took five years and lots of nagging for her to get her diagnoses of Ehlers-Danlos syndrome. She was misdiagnosed several times and also told that there were no further tests they could do and that her condition was undetectable. Because it was not something obvious she had to fight every inch of the way to get the right tests. Horrible to feel unwell and know in your heart that something is wrong and not get the right people to help or cooperate. In your position Nana I would keep nagging.

[Oma]

Sometimes they can't find out what is causing symptoms too, Also it's the time it takes to get tests done and results , here is two weeks and still no definite diagnosis for Brian all they have said so far is nothing on the MRI scan frightens them so we assuming it's not his Lymphoma , The amount of blood they have taken over them two weeks could float a boat still can't make there minds up .
Keep pushing Nana don't suffer in silence try researching yourself and ask ( no demand ) to see someone else

[Nana]

Thanks for your input everyone. It seems that your perseverance paid off Gem. I'm pleased that it helped your OH. I too am so grateful for our NHS. I just wish the Government would leave it alone. Good job your friend pushed too Bizzy. I think that's part of my insecurity with the Consultants. They missed a benign skin cancer on my scalp for 7yrs. They were just treating the psoriasis. By the time they decided to do a biopsy it had grown to such a size that instead of it's removal & a couple of stitches, I ended up having a skin graft & a scar slightly bigger than a 50p piece, that will never grow hair. Looking back now, I'm just grateful it was benign.

It's true what you say about knowing our own bodies. I'm seeing my GP tomorrow to tell him the situation. I asked that my Respiratory appointment be brought forward from May & they've said not, as that's the first appointment. So now as well as being left in limbo about my tummy problems I'm also having to fight to be seen quicker for this dreadful cough & all that it entails. I feel as though my poor body can't take much more. By the way Daisy, the gastro' specialist suggested I keep a diary & try a month off dairy...then a month off gluten etc etc. without any follow up. Talk about DIY. I'll take you up on what you suggest & ask to see a dietician. The weight is piing on & that isn't helping.

Thanks again, I feel a little more confident to stand up for myself now.

[Gemini]

Just imagine us, your granny friends in the room backing you up Nana

[Daisy]

Nana - I'm sure keeping a food diary would be helpful and putting in as much detail as you can, eg brand names, quantities, and if you have any symptoms afterwards. It's tedious but well worth it. I would also include how your cough is each day as well, because the two things could possibly be linked.

[Grauntie Mag]

I'm not sure if this will help Nana but I have had similar gut problems with no conclusion. I had a test for celiac which was negative. I was referred back to my GP who wasn't really interested. BUT...I heard or read somewhere that the strong wheat flour in bread can irritate the gut so now I eat gluten free bread. And it helps. Also I was taken off a drug (letrozole) which was also partly responsible it seems. Have you thought of looking at what drugs you take, and their side effects? I do hope it gets sorted soon Nana, I know how it can pull you down. Have a hug. X

[Glammanana]

Nana I feel for you and the problems you are having and hope that some resolve is made soon for you it must be so so frustrating for you,I am considering asking my Consultant to at long last confirm the treatment he is going to suggest for the broken shoulder joint which happened when I fell last June,I feel I should have had surgery at the time but he said it was so shattered and misplaced that he thought leaving it to see if it settled down and repaired its self to some extent,if he had gone ahead and done the replacement surgery by now I would be well on the way to recovery and not looking forward to have to go through the pain again when the joint is eventually replaced,I know I may be being cynical but I am convinced that "age" comes into it somewhere,this Specialist would have just seen my age on his appointments list and maybe already second guessed my problem without meeting me in clinic as he was surprised that I was still working full time and holding down a busy job,I'm sure he thought "I was a little grannie sitting at home knitting Shreddies" lol.I go back to see him next Wednesday and really need to get answers as the arm and shoulder is still very very painful,I can't lift anything or raise my arm above my waist to shower/wash hair/drive my car/hold baby GGD with ease/ oh and hoover & iron but thats of no importance as I have a man who can.

[Gemini]

Glamma, you certainly have suffered over the shoulder injury. I completely agree about the age thing. When OH saw the consultant we didn't like and asked not to see again, I felt he was reacting not only to her age (still in her 50's then!) but that she was single with no family, when denying her radiotherapy. (He had asked the question) I asked if he would be happy with that advice for his family, to which he had no answer!
Sometimes we just have to stand up for ourselves, or in my case, our loved ones!

[Clover]

I'm so glad the days are gone when doctors,especially Consultants were treated as little "gods".Although we must respect their knowledge and experience we now feel we are allowed to speak to them on a person to person basis .I've never been the most confident person in the world but even I don't feel so intimidated by them nowadays and will speak up even at the risk of making a fool of myself by asking questions.
I also write down questions I can think of in advance and warn the Consultant I have a list so he/she is prepared!

My good wishes to everyone who is waiting for appointments,tests,results etc.I know what it's like.

[Nana]

Get ready for this ... I took my OH as back up to the Dr's this morning & I'm so pleased I did. I discussed my problems calmly & said about my dissatisfaction with the specialists. After I said that no-one's even thought about examining my throat, he said he would refer me to an ENT specialist to see if it was anything linked to reflux/throat etc. as they would be the one's best to determine this. I said that I was getting upset about it all because all I want is to feel well & cough free. Everything was amiable until I said that the gastro' specialist discharged me even tho' he said at my first appointment that if the colonoscopy was clear there are other tests he would do & he hasn't. He then said I seem to be fixating on the fact there must be a test that cures all ills. I said I'm not fixating on that...perhaps what I am fixating on is that the specialist has gone back on his word.

He said he thought I was 'maybe' depressed. I said I know depression (have made it my friend over the years to be able to live with it) & I'm not depressed, but I am grieving. The two are totally different things. Then everything changed. He said, raising his voice, that he was out of ideas, that he will refer me to the ENT specialist then that's it. He doesn't want to see me ever again, to find another Dr etc. I was gobsmacked & fearful all at once. I've seen this Dr for years & have great trust in him.

I looked at my OH & said I hadn't expected this. I was so shocked. OH spoke up saying that he's seen me depressed & this is not depression. He also said that I have total trust in him (the Dr) & to refuse to see me is like cutting my lifeline at a time when I most need it. After OH had finished speaking with him he said 'well, I'll do the referral & we'll see where we go from there'. How can I go back to him now? So on top of all this I'm dealing with, I'm now without a doctor.

I'm so sorry that other Grans contributing to this post have their problems but I can't respond at the minute as I feel so utterly in shock right now.

[Plantaholic]

I have had two wonderful doctors, one went into private practice and now I hear my present one is off to New Zealand, so I will have to get used to a new doctor. Hope your referral goes well Nana, hed sounded a bit heavy handed with you.