[paulah76Participant]

Hi everyone,
I’m Paula and I’m 43.

It’s took a fair bit of reading and thinking before deciding to join as I’m not even sure I should be here and don’t know where to start without rambling or not making sense.

I’m not diagnosed you see and I’m very possibly jumping the gun.
I’ve had a series of blood tests that have shown up abnormalities. For example, high and steadily climbing mean cell volume, enlarged red blood cells, high IgM and a few others that I don’t understand much either. My results have been referred to a heamotologist and they have instructed my doctor to do more bloods for… Albumin, protein electrophoresis and total protein count.

I’m having various symptomns such as crazy tiredness, awful night sweats, a persistent pain in my right hip that I find hard to describe and seems worse at night to the point of waking me up. I could go on…but, rambling.

I saw a doctor today… Not mine… But she was ridiculously vague and said she’s just doing what the heamatologist tells her to do.

I’m just a little frustrated though I do know these things take time and every single person is different. It’s the no straight answers and vagueness I’m struggling with. When I asked about myeloma she simply said she ‘cant say’
I feel a bit silly and over dramatic but there’s clearly something going on.

Not sure what I’m asking, I just needed to vent a little I guess. Thank you for reading 😔

[val72Participant]

Dear Paula there are definitive blood tests for myeloma, which should give you answers soon.
One of the difficulties is that the illness affects different people in different ways, so it is quite hard to diagnose initially.
Hope it all works out for you.
If it is myeloma, although currently incurable, it does respond very well to treatment.

Best wishes
Val

[paulah76Participant]

Hi Val,
Thank you for taking the time to reply.
Are the tests that the heamatologist has told my doctor to do common in using to diagnose or look for myeloma?
I did ask the doctor lots of questions but she wouldn’t give any real answer and almost dismissed my symptomns and how im feeling. I genuinely lost count of how many times she said ‘i don’t know’

[val72Participant]

Hi Paula
The main blood tests are for the indicators of high free light chains and paraproteins, which take about ten days to come back from the labs. I’m not familiar with some of the other tests you mention.
I was first diagnosed in 2017. Fortunately my GP had another patient with myeloma, so recognised the symptoms quickly and I started treatment within 2 weeks at a haematology clinic. As I was nearly 70, I refused the stem cell transplant, as the consultants were a bit ambivalent about the long term benefits. I was on velcade for 8 months and had 18 months of remission before a relapse earlier this year.

Last time I was in considerable pain as I had 3 collapsed vertebrae and several fractured ribs, which eventually healed. I had a vertebroplasty (injection of bone cement for 1 of the vertebrae, but the other 2 had collapsed too much to be able to do that. However they are no longer painful and I have no fresh bone damage this time round.

I am now on long term chemo (lenalidomide) plus steroids and my understanding is that I will be on this indefinitely for as long as it works (some people have been on it for many years!)

Hope you find out just what is going on soon, so at least you know and can plan ahead.

Take care Val

[cygnetParticipant]

Hi Paula
I’m sorry you are having such a frustrating time with your Gp. The sad fact is Gps don’t see many people with MGUS or smouldering myeloma and that is why Myeloma UK has just issued some guidelines to try and help rectify this. I think most Gps will see about one patient in their careers – this is what we are up against!!!
Most of us who are already diagnosed have had a long journey like you – it is tough,lonely and hard to get your head around. You are not alone!!!
My Gp is great but he admits he knows very little about my condition so I’m not surprised yours keeps saying “I don’t know”… If you have questions or need someone to talk to then I would strongly recommend calling the Infoline – the Nurses are AMAZING. The whole process is very stressful and it does help to talk…
Normally there are bloods tests…more blood tests and then via a hematologist x rays or scans and a bone marrow biopsy. After all that assuming you need all of them – you will get test results that start to make sense and a management or treatment plan. Everyone is different!
I hope this helps
Good luck
C x

[laurafParticipant]

Dear Paula
My name is Laura. I am 40 (just) and your story is exactly the same as mine.
I have today been for a total protein blood test looking for Myeloma.
I went to the GP after thinking I may be going through the menopause or have something wrong with my Thyroid. The GP went all out and did a full blood count, checked my thyroid, hormones and vitamin D. All cam back fine except for my protein was high!
She said it was nothing to worry about. However I have exactly the same symptoms are you.
Back and hip pain. weird pain in my legs, night sweat and fatigue all the time.

So I pushed for further bloods which I had this morning.
Now just a waiting game.

[mulberryParticipant]

Dear Paula and Laura, I hope that you both have some answers now. Your experience with the initial medical contact feels very familiar, although my GP managed to frighten me to desperation telling me people can die of myeloma within 3 months. He would have been better leaving it to the haematologist! (18 months later i feel much better & no-one would know I have myeloma) However I found that once myeloma was diagnosed, a brilliant NHS system kicked in. I was able to change hospitals so that I could see someone with alot of experience of myeloma, have a dedicated myeloma nurse who is a font of knowledge, and all the staff who deal with me are cheerful, compassionate and helpful. If you do have myeloma, you will not be dealing with it alone!

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