Hi all, where to start… I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) in July last 2023 and after the initial shock I have more or less reconciled myself with it. However, during my monitoring other things strarted to crop up in my full blood count. Namely gradually increasing MCV/ MCH. ( B12 and folate have been tested and are normal, I don’t drink and my LFTs came back fine) my last blood draw in early December came back like this:
Mcv103.7 MCH 33, MCHC 316 ( range 316to 365) rdw was low at 12 ( range 12.2 to 15) platelets are at 401( highest they have ever been) and now rbc is 3.82 ( range 3.85 to ?) so I’m now thinking I might be be facing Myelodysplastic syndrome (MDS). Anxiety is through the roof. Has anybody else has similar numbers and can give me any reassurance please. The doctor is not currently too concerned. I’m dreading my next bloods in February. Thank you for reading, and advice is greatly appreciated.
Hi @ElaineW welcome to our forum and I can understand that your anxiety is through the roof, not knowing if there is anything to worry about does that to me too.
If you had not seen these results how would you be feeling?
Personally I believe doctors take more into account that just blood test results, we are all very unique beings.
I hope others can share their experiences.
What would help your current anxiety?
Do you want to wait till your blood tests next month?
Do you want to make an appointment to see your doctor at this point?
Do you want to get a second opinion either on the NHS or at cost to yourself or via any insurance you might have, privately?
Perhaps whatever you decide it would be worth you writing down all your fears, questions and practicalities to ask and be pleasantly assertive and ensure you get responses that you can understand.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Be very kind to yourself, personally I find anxiety is exhausting and does me no good at all.
Please do let us know how you get on.
Hi Erica,
Thank you for your detailed reply. I often wonder myself how I would be feeling if I didn’t know my results. ( Ignorance can be bliss)
The anxiety strarted when they found I had Monoclonal gammopathy of unknown significance (MGUS) but in my head that has taken a back seat for now as I watch my MCV/ MCH keep rising and now my rbc cells are a little low too. Of course I’ve googled the life out of it and my conclusion seems to keep coming back to Myelodysplastic syndrome (MDS). The hospital Iam under for the Monoclonal gammopathy of unknown significance (MGUS) are aware of these results and just say there is no need for any action at the moment but if I develop worsening rbc or any other for that matter they would proceed to do a bone marrow biopsy. So it’s just wait for now and have my bloods done again in February( which I’m dreading)
Theses results are from mid December and I think they think any sooner than February would be too often. At least it’s now only 4 weeks away.
Thank you once again for replying to me.
Elaine.
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Oh, @ElaineW I loved the words you said that are so true ‘I have googled the life out of it’
I wonder if Google will take over from medical consultants and awaiting appointments, just an immediate response by who knows who/what and medications delivered by drone.
And AI in a nurses uniform, well …
Anyway back to reality I was diagnosed 21 yrs ago and I still get anxious before and during all tests, results and appointments.
Please do post how you are getting on, many of us get these anxieties .
Personally I feel now we are into the New Year February suddenly feels nearer.
Hi Erica,
That would be a terrible thought, Google your symptoms, diagnose yourself and tell a robot what is wrong with you!!! If we didn’t laugh we would cry about the whole sorry situation. From what I’ve read on various groups most countries now seem to be in the same state.
Thank you for your understanding, having regular bloods and waiting for the results is like waiting to be hung ( or not!) I will certainly give updates on the next instalment!
Elaine.
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Hi,
Further my earlier posts, my focus now has returned to my IGM LAMBDA Monoclonal gammopathy of unknown significance (MGUS). My last results were iGM 1g/l so not much going on there. My lambda has now risen to 55.4 with a ratio of 0.24.You may think this is not far out but my lab at Leeds uses different flc machine to most places ( uses Siemens instead of freelite) their range is 0.37 to 1.56 so narrower than the freelite machine.
I had a call from advanced nurse practitioner who told me everything ok and more tests in 6 months which takes me to January 2026. I did tell her I have started to get tingling in my right hand and arm but she dismissed it. Since then I now experience burning in both hands and soles of my feet. ( waiting for Nerve conduction studies) in the last 3 weeks I have experienced dizziness and some nausea along with a strange cough and a blocked nose feeling which comes and goes from day to day. I just feel so unwell and very anxious.
I have asked my gp to write to haematology asking them to see me and they have accepted but not until late October. Iam so worried about progression to Amyloidosis rather than Waldenström macroglobulinaemia (WM) or Lymphoma and just feel so alone with this as my gp admits I know far more about this than she does. Any replies would be very appreciated.Thank you.
Dear @ElaineW,
Sorry to hear that you are feeling unwell. It is understandable that this is making you anxious and you are feeling alone. Do you have much support around you? We are all here to help and support you. If it would be helpful to talk things through, our nursing line is open from 10 am to 4pm tomorrow on 0808 2080 888.
It is good to know that the GP has spoken to haematology and they are going to see you earlier but the waiting is hard. You can reach out to the advanced nurse practitioner again as your symptoms in your hands and feet have worsened since you last spoke with her. You can also discuss your Amyloidosis concerns with her.
Has you seen your GP regarding your recent symptoms of dizziness and cough? If not, I would recommend doing so especially as they are making so you feel so unwell.
Please let us know how you get on.
Take care
Fiona (support services nurse)