Tagged: #Newbie # advice
This topic contains 9 replies, has 7 voices, and was last updated by 
richfs 2 years, 8 months ago.
Hi to all,
Looking for some advice please?
I have had some test results come through that I have MUGS, I was told that I would be sent to hospital on an urgent referral in the next two weeks for tests for Myeloma. I had to pack my job in last week as I am a freelancer and was working away from home, as I was told I would get a phone call any day soon. Today I have just had a call from my Dr who now says after a conversation with another Dr even though my symptoms are all pointing towards Myeloma that now because I am 44 and female it’s unlikely so I am now on a normal list and have to wait 8 weeks, so my question is please – Does anyone know of a private clinic that I can book in to go to and how much this might cost me as I am in so much pain and just feel like I am being fobbed off again. My bloods over the past year have shown that I have neutrophils below the reference level as well as a low white blood count, I have bone pain in my neck, back, legs and pelvis feel dizzy, keep falling over have had headaches, gone off eating lost weight and he says it’s nit really enough to push more tests on an urgent, I have been left now very confused and really upset with no support.
Hi Gizmo,
Very sorry to hear all the pain you are experiencing. I don’t really have any advice to offer as I am also a newbie at this, and finding that even if you have the best medical team in the world, you still have to sometimes shout a bit louder to get what you really need.
Perhaps it would be useful to email or speak to one of the specialist nurses on this website? I haven’t tried it myself, but they might be able to point you in the right direction.
My very best wishes, and hope that you get an appropriate diagnosis/treatment soon.
Lili
Dear Gizmo,
I really don’t see what being female and younger has to do with it. Yes slightly more men have Myeloma and you are young to have it but increasingly younger people are being diagnosed with it. The problem is that many GPs know little or nothing about Myeloma and they may only see one or two cases in their time as a GP. So many people go through unnecessary waiting times and many visits to their GP before they are diagnosed. If you are experiencing bone pain and your neutrophils and white blood cell count is below normal levels then I would think this warrants an urgent appointment.
If they have been tracking your bloods over the last year do you have copies of these. If not I’d ask for them. It could be that they have remained quite stable, in which case that’s why they have diagnosed MGUS and not referred, but if they are increasing then this is a worry. Have they been tracking paraprotein and light chains? If these are increasing then you would need an urgent referral. In my area you would be referred with MGUS and Haematology in my local hospital would do the monitoring to see if you go on to develop Myeloma, not everyone does.
Myeloma is such an individual cancer. If you are experiencing bone pain then it could be that you have lesions. There are certainly people who have had bone issues yet their blood results haven’t been too bad. An MRI or at least a CT scan is needed to show whether this is the case or not.
I would push to get your blood results and ask about paraprotein/light chain levels. You could get a private MRI done; my husband did once to speed things up (not for Myeloma) and it didn’t cost a fortune.
If you haven’t done already I suggest you join the UK Myeloma Facebook page. It’s very supportive and there are people on there with more experience and knowledge than me.
Good luck
Paula
Hi Gizmo
Please do not hesitate to push for further testing. Myeloma is notoriously difficult for GPs to diagnose, or to get the right balance. Mine went the other way from yours and told me that I could be dead in 3 months! (3 1/2 years later I am feeling absolutely fine)
If you have not had an electrophoresis test, you could ask the GP to sanction this. This blood test looks for a monoclonal plasma cell spike (rather than normal polyclonal plasma cells).
Depending on where you are you could seek a consultation at a private clinic from a haemo oncologist who also works for NHS (so if diagnosed then ask to be seen by same Dr on NHS) but as you have bone pain probably the cheapest & quickest solution is as Paula suggested, to get a private MRI scan done (wherever you can get it done). You will need an MRI or PET scan anyway as part of the diagnostic tests.
This period, after Myeloma (the disease most of us have never heard of), has been raised as a possibility, and before treatment starts,(if it is necessary) is always shocking and frightening. However many of us (& almost all ‘younger’ ones like yourself) respond really well to treatment and later feel much, much better.
With any chronic disease, we have to become good self advocates and be prepared to be persistent when it comes to getting answers, and often treatment is a dialogue between Dr and patient as there are quality of life and practical issues that ultimately determine which treatment to pursue. It is stressful when you are having to push and argue for tests from the very start,& far too common for Myeloma patients, but ultimately not necessarily a bad thing psychologically.
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
Hi Gizmo
Not being a doctor, and going on my blood test results around diagnosis, it seems to me that all the results you mentioned are relevant. I have a diagnosis of IgG lambda too.
If it helps I can give you my ‘ out of normal range ‘ results before/around diagnosis.
The clinical features are an important dimension to diagnosis, high calcium levels, renal damage, anaemia and/or bone damage, (so called CRAB features) but also the percentage of myeloma cells in bone marrow which can only be found by a bone marrow biopsy, the level of paraproteins and light chains (for 99% of us). However haematologists are the ones to know which combination of results are the most significant, and tip the balance between MGUS, MGRS (monoclonal gammopathy of renal significance), Smoldering MM & Myeloma itself.
As you will see from my results I had anaemia and renal issues, but the critical thing for the haematologist wasn’t these, nor my level of paraproteins or light chains, but that I had 60% myeloma cells in the bone marrow biopsy. Even then I didn’t actually start induction therapy for 3 months (partly my responsibility as I transferred to a bigger hospital & to a myeloma specialist).
My out of range results were:
Serum total protein 91g/l later 98g/l (normal range 60-80 )
Albumin at lowest level 35g/l (went lower before treatment started)
Erythrocyte sedimentation rate 80mm/h (normal range 0-30)
Haemoglobin concentration 102g/l (115-165 normal range)
Red blood count at lowest normal level 3.8 10*12/l
Haematocrit 0.314 (0.37-0.47)
Mean cell Haemoglobin level 26.8 Pg (27-34)
Red blood cell distribution width 15.3% (10-15)
Creatinine 97 umol/l (range 45-84)
eGRF 55ml/min (chronic kidney disease stage 3a)
IGA 0.22 g/l (0.8-4.0)
IGM 0.35 g/l (0.5-2.0)
IGG 39 g/l (6.0-16)
Lambda light chains 254mg/l (normal range 5.71-26.3)
Kappa/lambda ratio 0.04 (0.26-1.64)
Paraprotein 42g/l (normal 0)
Beta 2 microglobulin 2.86 mg/l very quickly rose to 3.48 (1.0-2.40)
I hope this isn’t just totally confusing.
Hi There,
I’m 46 and female and was diagnosed on 15th Aug.
I was fobbed off too as menopause and my haemoglobin very low. I was rushed into hospital after my husband carried me into the doctors surgery. I had bloods done there after 2 months of bloods being done and awaiting a consultant haematologist app. When I was admitted I was in renal failure.
I would keep pushing, My GP thought I needed a blood transfusion !! I ended up with 5 over 2 days!
It was the consultant in A&E who pieced oit altogether .
Like you I had no appetite , couldnt sleep, the pain in my lower back and rib cage was excruciating . I was quite clumsy and would bump into things also. The fatigue was awful too.
Please keep nagging your doctor, if they suspect Myeloma they should follow through with the relevant tests. Ask to be sent for a bone marrow biopsy .
Best of Luck.
Hi Gizmo, I have recently been diagnosed with Myeloma though I think it had been active for a few years prior to this. I remember an appointment with my GP a few years ago when she said there was something strange going on with my white blood cells but did not follow up with it. My diagnosis was more by chance than design, tbh my GP’s really didn’t have a clue as to what was going on and it wasn’t until I was rushed into hospital as my sodium levels were close to critical, and it took them 3 weeks to realise this and do something about it before they would refer me. Once in hospital they had diagnosed my condition in 2 days with a bone marrow test done on the 4th day.
I do realise that GP’s have a hard job, especially at this time but the alarm bells had been ringing for some time and it seemed like they were just fobbing me off. If I knew then what I know now I would have been more forceful on insisting that they should refer me for further tests and analysis at the hospital instead of waiting until it became critical, the GP I last saw apologised to me for the bad care I had been given and told me I was a couple of points away from comatose or death.
So maybe you should be a bit more insistent that they treat you as an urgent case, certainly sounds like you are. It was the extreme pain in my back and chest which first made me go to the GP, since found to be 3 compressed vertebrae and a thinning of the bone in the humerus in my left arm. Next week I am getting a pin put into the bone to prevent fracture. So time is of the essence, don’t let them fob you off.
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
Hi Gizmo,
It’s been a while since you’ve posted on this forum, I’m just checking in to see if you’re still looking for advice or support?
Myeloma UK have just trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.
I ams sorry to hear of your MGUS diagnosis and other health struggles.
My monoclonal IgG level was almost 40g/l at diagnosis of myeloma, 30g/l being the threshold for diagnosis of myeloma. A friend of mine has ‘smouldering’ or asymptotic myeloma with an IgG level of just under the 30g/l threshold so is just being monitored and has been stable at those levels for 3 years. As I understand it, MGUS and smouldering myeloma may or may not lead to active myeloma, so monitoring your bloods every 1-3 months would be normal practice.
It sounds to me, with your bone pain and weight loss like there is something else needing investigating. Have they done a bone marrow biopsy?
Almost everyone you hear of who is diagnosed with myeloma has had to really push their GP to get to the bottom of their symptoms, so do persevere. I have also experienced very poor communication from our local hospital, again I almost always have to chase them up over appointments and results – it’s tiring, but sadly part of the process.
Do get back in touch via the forum if you’d like to – we’re here for you. I hope that things have improved for you since last summer.
Best wishes,
Rich.
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