[bandityogaParticipant]

Hi all

We all have to complain about poor gp's and doctors. Ian's surgeon said he would back us up if we need him. He also said that Ian had classic signs of myeloma and the gp and a good physio should have pciked this up.

No SCT planned for Ian. Got blood results today and light chains now 130 but consultant said all other bloods etc were good and he will not get any chemo hopefully for a few years.

Love Maureen x

[PerkymiteParticipant]

Myeloma UK ran a programme to inform GP's of the symptoms to watch out for, in fact I think they are still doing it. It comprises of a letter and a flow chart to diagnosis Myeloma. If you have not made sure each GP in your local surgery has seen it I urge you to do so. I did all the GP's in the Taunton Area, with a personally address note attached.

When I was eventually told I had Myeloma, following a broken neck getting out of bed on the 9 Jul 2009, I was told that I probably had had Myeloma for 2 years already.

I agree you have to be proactive. We are so ready to believe a person in uniform or a white coat!

Kindest regards – vasbyte

David

[teds31Participant]

Hi, Is it true that blood tests don't always show MM as it has to be a particular one. I had a blood test for a chest problem and they must have done the right one because my GP did another test(Bench Jones) and that's when they found my MM.I saw Bench Jones on the note to the nurse, I then went home and looked it up on the computer WOW what a shock. Ted

[VickiParticipant]

Hi there,

So hope that you are able to progress this with the nhs. Colin's story of diagnosis was much more different and efficient. He went for a blood test on a Monday, phone call Thursday, follow up test flowing Monday, 24 hr urine test in the same week. A leaflet from the Gp following Colin's insistence suggested mm and then2 weeks on he saw a consultant. So within about a month end to end he was diagnosed. The Gp was excellent! I think the advantage though was that Colin's Gp had some experience of working with cancers and this type. We were'lucky' and thankful.

Sadly it's not always the same….best of luck 🙂

Vicki and Colin x

[eveParticipant]

Hi Ted
Blood test do vary,you need to take certain blood test and urine test to suggest a blood disorder .

When you feel ill a general blood test is taken looking at different functions,doctors usually have blood test on a chart in there computers so any change stands out clearly. These should alert doctor to changers within the body,here is an example

GFR 55 in March
GFR 40 in December this shows kidney function dropping,in theory this should be picked up and rechecked to see if Kidney function keeps dropping.
Other blood test should be taken ESR,CRP which are test of inflammation .urine also should be tested,if readings on chart are still in decline,they know with results plus other factors general health or in Slims case,sickness,weight loss,general colour,problem with bones..
All indications show problems of disease,but the only way to confirm is a BMB. If it is picked up very early,then less damage takes place within the organs and bones.

The bloods basically show markers for a GP. I believe very rare cases are hard to define but other symptoms should put any doctor on alert,you do not go to the doctors unless you are I'll, so patients should be listened too.

Next time you go to your doctor,s Ted ask to look at your chart on the computer. Love Eve

[dickbParticipant]

Sound advice from Eve. Fortunately the doctors here give me a print out of all the blood tests, they will give me a PDF file once the treatments done and I do keep everything in a folder at home. It helps to understand the illness and what is happening to me.

[bandityogaParticipant]

David

Can you email me the article for gp's to look out for myeloma.

email address maureen_cerdan@yahoo.co.uk

Thanks

Maureen

[eveParticipant]

Hi Maureen

Ring up Myeloma UK speak to nurse and they will send you the package as many as you want to take into GP.

Wishing you well and it's good to know you have some support . Love Eve

[DaiCroParticipant]

Hi Maureen,

I was initially diagnosed with secondary bone cancer, primary unknown by my relatively small local general hospital in North Pembrokeshire. They carried out a number of tests including one for MM. The haematologist who carried out the test said that he would bet his house on it being MM as all the symptoms were those related to MM (he had never dealt with a case but his research confirmed his suspicions, The results came back and proved negative… the haematologist was genuinely surprised. A year later my consultant at Nottingham said that the hospital in Wales had carried out a medical student level error. Every initial test for MM MUST include a test for Bence Jones by the way of a 24 hour urine test, which they failed to do. 🙁

If they had then there were sufficient facilities for the hospital to carry out my treatment… how different life would have turned out to be but we will never know now. One thing is for certain… my 70% bone damage, which occurred in the first year under the consultant in Swansea (160 mile return journey for each consultancy -under him for 9 months without one single blood test etc.,) would not have occurred and my SCT Harvest would most likely have given enough cells for 2 SCT's plus the quality of life without the bone damage pain… but enough of the what ifs'… I know they don't help.;-)

I still have time to complain about my Swansea based consultant and your complaint against your GP is encouraging me to move on with mine. I did try several times with several Catch 22's that stopped progress in its tracks. Although I was looking to ensure that he could not, should no be able to do the same to any other patient by means of my complaint, perhaps it is now time for a decent no claims, no fee solicitor. we will see.:-)

Best wishes with your medical negligence complaint.:-)

Dai.

[Kazzam2Participant]

Hi Eve and everyone,
I agree, the failings are definitely in the GPs. I was having treatment for some months at a private osteopath based in my surgery. He said something was amiss with my back and went to see my GP to recommend he send me for a scan. My GP refused and just kept plying me with painkillers. All this happened approx a year before finally I could not function and was rushed to A&E, and diagnosed quite quickly. Not a good experience and I could have been left paralysed.
best wishes
Karen

[eveParticipant]

Hi Karen

I am so sorry to hear the outcome of Myeloma,that should never of happened ,we need to hear from people like yourself,people who if they had been diagnosed earlier who would be in better health as less damage would possible not have happened,I think you GP owes you answers!!!

Do you remember the name of the private osteopath ,may be he would be prepared to explain his part,as I can only assume after telling GP you needed a scan,he stopped treating you!!! If he did not you are less likely to get information from him!!!

This needs to be taken up by Myeloma UK for every patient on here who feels that if the doctor had diagnosed them earlier,they would not be living with so much damage to there bodies!!!!
I still stand by my statement ,if the doctors felt they would not be drawn in to litigation,we would have answers,plus knowledge would be shared,and the future generation of people who get Myeloma will be diagnosed early.

I know it does not change your position or my husbands,we were lucky he uses a wheelchair only when he can no longer manage to walk which is,increasing. The Myeloma is back ,and going about its business in his body. Eve

[bandityogaParticipant]

Eve

I phoned Ellen and the packs are on their way. I will distribute them to all the local gp surgeries.

Hope Slim is keeping well and gett appropriate treatment.

Maureen x

[eveParticipant]

Hi Maureen

Well worth the phone call,everything helps.

Slim is not on treatment,that is the annoying thing,because the only way to tell what is going on is in BMB,had one in February which showed 10 percent ,another one 7 May,we are waiting on results.bloods showing small changers ,but not drastic,on a personal level I have learnt to go by my instincts ,so when the results come back I am expecting the BMB to show a rise.
The question now is what treatment plus some questions to be answered!!
Only a couple of days to go for answer on BMB then see consultant on the 24 May.

Good luck for the future,if things need adapting for Ian I would start getting the departments in place,I do not know if you are aware disability gadgets you get VAT relief, I was not aware when I had a large shower fitted instead of a bath!!! Saves some money. Love Eve

Ps had to edit my I pad is having a mad moment

[FOXLEYParticipant]

Hi,
Have not been on the site for a while but wow! the number of sufferers with similar stories of slow diagnosis. I had excruciating back pain but GP said take pain killers and don't molly coddle it. This seems to be the standard advice that GP's are given. My next door neighbour, an orthopaedic surgeon, diagnosed me because: a) orthopods are often in on diagnosis of MM and b) because he knows my lifestyle and that I am not a back achy sort of person.
My GP was very contrite afterwards. I gave him copies of the Myeloma UK guidance for diagnosis of MM.
Chris

[bandityogaParticipant]

Tom

I would complain to the consultant you saw privatley and ask why you didn't get an mri scan.

Maureen

[Author]

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