[gizmoParticipant]

Hi Jiffie & Lois

Thank-you both for your recent replies I truly appreciate it and both of what each of you has said is very helpful indeed.

I eventually did push to have a second opinion and so I was sent for more blood tests and a PET scan, 4 weeks later I am still waiting for my results, I keep calling them, Christie’s the hospital I was sent to for the PET scan said they sent the results 3 weeks ago so I have called my hospital Salford Royal to ask what the results are but they just said they can’t give them to me over the phone but they will send in the post, I am still waiting and feeling down as I feel fobbed off again, surely if the results was clear a quick phone all to say would not be much to ask so now I am thinking all kinds.

I know from previous results my IGG was high over reference and my IGM was under, reference and M protein was present as well as low red amd white cells, particularly the neutrophils which was under reference but my home Dr said this is normal and nothing to worry about and that lots of people have low neutrophils. I have nose bleeds daily, colds, headaches, a rash all over my legs, suffering with my bowel which was investigated quickly and I have been told it’s Diviculitus so maybe that’s the problem, just so confused with everything and and getting really depressed with the not knowing and the lack of communication from hospitals.

Thanks once again to you all, you keep me going, thanks 🙂 x

[gizmoParticipant]

Hi Medby

I cant answer your questions as I am very new and going through the process of finding out things but I just wanted to say Hi and pass you this information that I found online which was very helpful indeed from the NHS York hospital.

https://www.yorkhospitals.nhs.uk/seecmsfile/?id=2442 – copy and paste into your browser

How are you feeling now, have you been confirmed as Myeloma?

Gizmo

[gizmoParticipant]

Hi Lili, Paula & Mulberry

Thank-you so kindly for taking the time to give me some advice, it really has helped greatly, I have also spoken to someone here at the charity who was so very helpful and has sent me some private places that I can go to should I wish to and need to. I just wanted to try and gather some more information before replying as I think like you say we have to become our own experts in reading our tests and coming up with answers.

I have had a look back at my blood tests and I am below reference limit for neutrophils (1.64), white blood cells the lowest 3.8 & red bloods lowest 3.9, so all either borderline or below reference & it has been going down over the past few blood tests, quite frustrating when you see below reference level on your test results and the Dr says its okay, even though they are going down each time.

The Monoclonal component level is 4.2g/L presence of an IgG Lambda monoclonal component band and it says patient has small paraprotein band detected which is in keeping with MGUS, Immunoglobulin M is below reference limit, Beta 1 Fraction is above reference limit and I have stage 1 CKD kidney disease, not sure if any of this is relevant?

The symptoms I have been having which led me to go to the drs in the first place was pain in my bones, especially pelvis, back and legs, being very off balance and falling over often, tiredness, puffy swollen ankles and knees, vision blurred and also small bleeds on the white of my eye which my optician was really concerned about but the Drs was not, excessive thirst and going the toilet often and sweats of a night.

I am now at the point with my Dr of he has now agreed for me to have further tests to do with the MGUS but he said I will not be put on the urgent case list I will have to wait around 10 weeks which I feel is unfair when this has been going on for around a year and half.

Thank-you once again for your help and advice and if you spot anything from my rough findings please advise me, I know we are not Drs but I think some of you on this forum know more about it than my Dr.

Many thanks and have a good week x

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