Thanks Bananacake. I will try my GP on Monday & if no joy I will call & speak with a nurse here.
Thank you so much
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Thank you so much Gemma.
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Hi everyone,
So hard to get my results. I am a nervous wreck but both the blood tests and the Bence Jones test have come back as normal.
Do I now need to request further urine/blood tests or are these enough to rule out Multiple Myeloma? Also, do I need further tests to discover what these areas of concern are on my bone marrow? Still not able to speak with a GP! Thanks.
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Hi@Jude13 ,I cant understand why you havent been able to speak with
Your GP,it sounds like youve been through the mill chasing your results and trying to get some answers and having answers and explanations. It is really important to know where you are going with things and to alleviate your anxiety.
Can you get an appointment at all to speak to your GP and ask all the questionâs, @Gemma said in a previous post if the word" myeloma" has been used you need to know what more is to be done.You said your blood results were normal ,did you get a copy and a copy of the serum protein result?
I found it very helpful to talk with Myeloma support helpline as well as BCUK who give helpful information about the steps to take in finding things out and how to ask the questions.
If you have a copy of both results you can discuss this with them.
I wish you well in getting an explanation.
Bannanacake
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Hi Bannana cake,
I have tried all of this week but still unable to get to speak to a GP. Message says due to staff shortages to hold only if an emergency. I have emailed to ask if I need other tests to determine what these altered changes on my bone marrow could be as Myeloma blood tests and urine are normal.
Just fed up of worry. Yes, I have the blood test results emailed just not the urine test results.
Thank you so much for replying.
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Hi@ Jude13 I am not surprised at your worry and getting ground down by it .Im afraid Iâm a bit persistant and I would hold on to speak to someone because if it was an emergency ,emergency youâd call the ambulance and not the GP.Its your âemergencyâ. There is a good thread from@Gemma at the minute about symptoms and blood results,and please do think if calling the Myeloma UK helpline or BCUK
In the meantime hang on in there I find getting lost in something helps take my mind off worry but you have a right to an appointment or call back etc.
Take care
Bannanacake
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Hi @Jude13 you sound so concerned and perhaps whoever ordered your blood and Bence Jones test is the person you need to speak to either on the phone or in person for your peace of mind.
I will copy your post to @GemmaBloodCancerUK and the Blood Cancer UK support line is there for you.
That is good news that your blood test and Bence Jones tests results are normal, but it has not given you the answers you are looking for.
Be kind to yourself in the meantime.
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Thank you Bananacake. The phone is constantly engaged at my GP practice every day, with just a recorded message re the Covid/Flu jab & to press a number & hold only if it is an emergency. I emailed again this morning but not had any reply.
I did look at the list of symptoms & I do have bone pain, night sweats & feel really tired all of the time. I donât know if I should try to change practices or if would hinder things with my records not getting to a new practice.
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Thank you Eric. I had a private MRI scan & the neuroradiologist then sent the report to my GP to request the Multiple Myeloma screening.
I will try ringing a nurse here.
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Hi @Jude13 I have been naughty in the past and when I get the message to only stay on the line if it is an emergency I have done so.
i also think, from what I hear, most surgeries have similar phone systems now and are all struggling. All requests for appointments have to be made online now at my surgery now.
Look after yourself and let us know how you get on
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Hi @Jude13 . Has your surgery got econsult. I ised that the other day amd is like an email service where they have to respond to you. Hope you get answers soon. The waiting is always the worst i think
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Hi Mandi713
Thank you for your message. No my practice donât have that. You are not even allowed to book a phone call with a GP via email, only able to contact the receptionist by email for repeat prescriptions update & wait for them to respond. It was difficult enough before but itâs got worse since Xmas. They are saying itâs due to staff shortages, with only one GP available for emergencies only so no idea where the other 7 Gpâs have gone the past 6/7 weeks.
They have only had a skelton crew of 2 receptionists since the pandemic began.
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Hi everyone,
I got a call from my GP yesterday. He was very thorough & asked me a lot of questions. He said he had contacted a Haematologist regarding my scan results & was waiting to hear back, but as my tests were all normal he did not expect them to want to see me or arrange further tests. He did say regarding my weight loss/ tiredness/ bone marrow findings that he was going to refer me to the one stop shop at my local Hospital. He said they would probably do a full body CT! Very worried now.
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Online, it says this one stop shop at my local Hospital is for when GPâs suspect cancer but tests show nothing unusual. GP also wanted to arrange a chest X Ray, no idea why but I have had so much radiation & have been told not to have anymore. He understood this so I am wondering if this one stop shop will do a full body MRI instead of a full body CT.
GP has also arranged more urine tests & more blood tests.
The vein in my left arm popped when they put the line in for the contrast dye for my brain & cervical spine angiogram.
My arm & elbow is still so painful, despite it being 3 weeks ago.Only now the bruising has gone.
I bruise so easily & seem to bleed for hours for just a small cut like when shaving.
I just feel I am in limbo land.
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Hello@Jude13,what a journey you have been on and still going .Well thank goodness you eventually got to talk with your GP. I am sure its just another time of more uncertainty for you and as you say youâve has so many investigations and blood tests so far .The positive thing is that it sounds as though the "One stop shop"will most likely know the investigations to do from your medical history so far , I hope you dont have too long to wait .
So far as the bruising ,arnica cream if Iâm allowed to give a brand name is good to sooth the pain .I find it helps ,also press down hard after needle comes out ,try an ice pack after to keep bruising down,from my experience
It will feel like "limbo"just now but youâre GP has taken the next step so hopefully you will know soon.
Just have to hang on in there and the good thing is the forum is here and the BCUK support line is open Sat Sun till Ipm 0808 2080 888.
I hope you can find something to take your mind of it all in the meantime.
Bannanacake
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Thank you so much Bananacake.Will give them a ring tomorrow.
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@Jude13 your GP sounds very caring and extremely thorough and discussed everything with you.
Locally here one stop shops at my hospital have been brought in as a cost effective and time effective way of seeing patients as lots of appointments do not have to be made and the patient have several tests in one or so visits.
As @Bannanacake says so well it will feel like limbo, which feels a very scary place to be for so long.
When I look at my blood test results why do I get so anxious at the minority of results that are abnormal and not celebrate the majority of results that are within the normal range, perhaps I am just human, I think !!!
Perhaps the majority of us on this forum feel in limbo land one way or another, thank you, you word it so well.
Please keep letting us know how you are doing, I am thinking of you
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Will do Erica & thank you so much.
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Hi @Jude13 Iâve been thinking of you and just wondered how you are doing?
Look after yourself
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Hi Erica,
Thank you so much for thinking about me. I have not been feeling very well. A combination of stress & sleepless nights I think Good news though. I spoke with the nurse at the one stop shop yesterday, who was so lovely. I explained my concerns regarding yet another CT scan & she said she would speak with the radiologist there as sometimes MRI or ultrasound can be used. She said I would also have some more bloods taken there. ( If my veins can cope)One for ovarian cancer & one for celiac disease ( unsure how itâs spelt) I am booked in for 9.15 this Friday so things are moving. I asked if I would be examined & the nurse said no as my GP had already done thisâŚ. except he hasnât,it was all decided over the phone!!!
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