[rosie1961Participant]

Hi Helen, hope the new consultant has better people skills. These things are so important. Will definitely be thinking of you on 25th Feb.

Saw my GP yesterday evening and she is sending me for a lower spine MRI to see if anything there is causing the cold leg. It’s a mystery!

[Anonymous]

Hi Rosie, she has no people skills, i really hoped it was just me and she had a bad few times of meeting me, but no , my daughter rang from work , wanting to know who I had seen she couldn’t remember Her name, told her and she went …she’s at it again, her work friends husband had gone on his own to an appointment he had been told was about his rheumatoid arthritis walked in sat down and said now what’s up and she just said you have incurable terminal cancer ! but I still need to run this test and then that test and we will get back to next month but it’s not looking good …do you really tell someone on their own in such a manner.?

i know there is no good way to tell anybody anything bad but she sure needs to go and learn some better way of dealing with people I didn’t sleep well cos all I could think of was how she had made me feel and how this poor man must have felt all by his self  and she is only an haematogist not a myeloma expert.

hope the MRI goes okay…I was rubbish when I needed a head one a couple of years ago and I ended up paying to go private to open MRI in leeds. It was brilliant I sat up, watched tv with my daughter at my side and really didn’t need ear plugs as so much quieter,  shame it cost but it was the only way I was comfortable so I will be thinking if you.

off to dog proof the garden we have got two puppies to give me something else to think about…at the minute with all the wet weather and snow we have a mud bath so it’s a digging weekend could do with Alan Titchmarsh.

hugs Helen

[rosie1961Participant]

Unfortunately some medics just see people as pieces of meat. I also think when they can’t cure it they just don’t know what to say. Horrendous for that poor guy.

I recently had head/neck MRI as they were concerned about the tingling in my arms and hands. Although ordered by nhs it was at a very local private clinic. I was more scared of the result than being in the machine! It was all clear – a big relief.

I’m sure the puppies keep you busy!

[rosie1961Participant]

The GP surgery called today. They have checked the bloods ordered by the haemotologist. The only one that was highlighted as abnormal was the spep, showing the same result as before – small monoclonal band. It’s a relief that the tests did not show anything else.

 

Will see what haemotologist says on 25th and wait for MRI.

 

My leg is still cold at times and both legs have started burning in the night, waking me up. All strange!

 

 

 

[rosie1961Participant]

Hi Helen, hope everything goes ok for you today. I saw the haemotologist. She sent me for full skeletal x rays. She will review those with my bloods/MRIs with her team next week. I see her again on 10 March.

[Anonymous]

Hi Rosie did you have to do a pregnancy test for the xrays I did was abit taken aback, fingers crossed for good results

hugs helen

[rosie1961Participant]

I didn’t but I had to swear that I wasn’t pregnant (would be a miracle in more ways than one!) and sign a form 🙂

[rosie1961Participant]

How are you feeling today? Is it worth asking for the appt they offered you on 9 March?

[Anonymous]

Hi Rosie, they cancelled that appointment so I have been to see my GP bless him he has taken on so much with me since arriving at the Practice in November last year  but his face this morning when he realised they hadnt read his letter about me was rotten to see, he just went so they read none of this !!!!! so the answer is no I cant do 9th March but my GP will do the blood tests three weeks before I go to make sure everything is ready for them and then tell me results so I am already clued up before I sit waiting again… Yesterday the consultant told me he would get me Friday 9am appointment and to tell them I had had my blood tests and hopefully I should be seen before 11 am this is a better clinic, I know I know I know I shouldnt moan as we are only in the early stages of all this , we have been given information we would rather not have been given but atleast we  are monitored and might get a better response and life from it but why tell me my appointment is 9 am but I might be in before 11am this is just ridiculous and I want to be treated better than this, the first experience at the previous hospital was horrendous and then yesterday think it was a nightmare the only sense I have had out of any of this has been Professor Cook at Leeds, Rita Myeloma local support, email replies from nurses, my GP who is having a crash course in Myeloma and you lovely people on  here who tell it how it is and listen to me moan thank you all its such a help xx

 

[rosie1961Participant]

I saw the Dr today. All my x rays were clear and I’m officially MGUS. M spike was 6g/l . They will see me again in 6 months.

The B12 jabs have cured my tingling, but I am still getting random cold patches. They suggested asking the GP to refer me to neurology.

Thanks to all for your support on here 🙂

[Anonymous]

Hi Rosie so pleased sit back and chill big hugs Helen x

[keithmtParticipant]

Great news Rosie, that’s made my day.

Keith x

[rosie1961Participant]

Thanks Helen and Keith. Best wishes to both of you – I will keep checking in!

[graham-cParticipant]

One thing Rosie 1961 and be assured that I speak with no qualification or expertise, but from my own research the 24 hour urine test is not the method usually used to detect myeloma. If they use that method it is a 24 hour urine test and must include one sample first thing after waking up (which it would be if it is properly 24 hours of course). I don’t know why they’d want a smaller sample.

Twice I have provided 24 hour samples and, for the second one I got the mislabelled and gone missing response which makes me think that perhaps some doctors maybe following old guidelines and the labs could be rejecting the samples. I have read that only in detecting amyloidosis is urine the test otherwise paraproteins and free light chains are calculated from your blood tests.

Apart from testing for amyloidosis I don’t believe the urine test is any more informative and a 24 hour sample is bulky and I read that it also needs to be kept refrigerated. If you hand it in at your local surgery they simply may not have the facilities to handle it.

As I have had one serious instance when results were withheld from me when I had kidney cancer I nearly came to blows over the missing urine test. If they’d told me that it was unnecessary and they didn’t need it, I would have been fine but hospitals never do that which is silly.

[Author]

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