Welcome Anne. Hopefully they’ll be happy to enroll you in the study.
Susan
Hi Anne- not sure about that. I’m about 15 miles away and contacted the research nurse at Freeman and she asked Prof Jackson who’s the study investigator if I could go into the trial and he was fine with that. I’m actually going there tomorrow for first visit. There are only 2 visits.This one and another in 2 years time.
Not sure where you are in the country, but there may be a hospital that’s taking aprt in the study nearer to you.
If you follow this link Unravelling MGUS it has all the information about the study.
At the bottom there’s a list of participating hospitals and contact details.
Hope this helps,
Susan
Hi Lacey,
I notice that you haven’t updated for a while. I hope this isn’t a bad sign.
I have IgM Kappa MGUS-except not really “of unknown significance” because my paraprotein level doesn’t meet the criteria for MGUS-it’s tiny, AND I have associated Anti MAG antibodies which are causing peripheral neuropathy and balance problems, so the clinical significance of the Monoclonal protein is known!
I think this is a problem with how medicine classifies these critters (paraproteins).It’s an oversimplification of what is a complex syndrome with a lot of heterogeneity and there’s still alot to discover about them, especially Anti MAG, which is apparently very rare, especially in females. Trust me!
As I have IgM paraproteins, unlike your husband, progression to MM is much rarer, however the risk that these nasty’s will progress to types of Lymphomas ie Acute Lymphatic Amyloidosis or Waldenstroms macroglobulinaemia is higher.
Anyway, I thought I’d let you know that I’m also in the NE of England in Durham and see a Haem’ there.
I’ve also seen a neurologist who visits from Newcastle.
I actually worked as a Nurse Specialist/Practitioner at North Tyneside and Wansbeck, so I probably know the Haematologist your husband has seen.
I also wanted to let you know that Freeman Hospital are recruiting for a clinical study called Unravelling MGUS. There’s no treatment involved. They hope that by collecting information and blood samples from people with MGUS and then following up in a couple of years to see how they’re “progressing” they can learn valuable information about which people are more likely to progress to MM etc. As there seems to be a lot of missing information I was keen to try and help. I have the details and they’re also on the clinical trials section of the Myeloma UK website.
I don’t know if everyone is aware but this is the myleoma uk clinical trials page.Myeloma UK clinical trials
Hi kruzgal,
Agree not a lot of info out there and a paucity of research too. I’m still trying to find out about a study called iMAGine. It’s not a clinical trial, more a registry with follow up to find more information about progression,response to treatments etc Are you in the US?
I’m only a member of a French facebook group.
What symptoms does your husband have?
Thanks Graham. I’m not under follow up at a hospital, which is why I asked for a re-referral to haematology a few weeks ago. I don’t have confidence in the GP’s and they’ve never discussed paraproteins with me and I haven’t seen a haematologist since the paraprotein was picked up last November. As I said before, I used to be a Nurse Practitioner in acute care but I also worked on Intensive care for 10 years and my bug bear is being told “blood results are normal” or “no further action required”.Also had “mess ups” at hospitals, worst being at the hospital where I was working as a Nurse Specialist with a misdiagnosed ruptured ovarian cyst with necrosis of ovary which nearly landed me in ITU, and would have done if I hadn’t insisted on an ultrasound scan, which they did as an OP 3 days after they discharged me. Even with normal blood results I think it’s important to look at trends in blood results. In June last year my eGFR dropped to 70 but was back up to >90 in July. Don’t have anymore results. I calculated that eGFR myself. That’s a low eGFR for somebody my age with previously “normal” kidney function and at that time my Creatinine was in normal range.A year ago when I asked for print outs of results from an old GP, I discovered that a year before (2014) a new patient routine urine microscopy had shown considerable amounts of blood, white cells and protein despite the fact that a urine dipstick test only showed a trace of protein and I had no symptoms of a UTI. Nothing was ever done about it and when I mentioned it to last GP’s they said dipstick was clear and wouldn’t even send a urine off to the lab’. My LFT’s were normal in July last year (last ones known to me) but my Alk Phos was on an upward trend over a period of just 2 months, although still in range.
Now I have intermittent urinary tract symptoms (pain after urination, sharp pains in both groins, urgency but passing small amounts of dilute urine) and signs which may indicate liver problems eg feeling of fullness on the right side under ribs, pale stools and palmar erythema (red palms).
My weight is continuing to drop although not drastically. One thing that is good is my appetite which suggests nothing too major going on. I haven’t been as light as this since I was about 20.
I went to new GP for NP app’t with nurse and she’s got me an app’t next week with a Doctor (? consultant) who visits the practice weekly to see about my scalp and discuss all the other things and then Haematology in October.
Whilst I feel blood results are very important I think we’re becoming more like the US where test results are given higher priority than clinical history and examination.That I think is the reason why a lot of cancers aren’t picked up on till later on. Apart from too look at my head a Doctor hasn’t laid hands on me for 3 years and nobody seems capable of documenting a decent history. You go to GP and it;s a different Doctor and there’s no “recap” it’s just a case of dealing with the imminent complaint in isolation of anything else.Unfortunately I’ve grown very weary of battling with last GP re blood results etc, but I will be asking if I can have copies of ALL of the next lot that hopefully get done in the next 2 weeks or so.
When I did my advanced clinical skills course as a NP it was taught mainly by Consultants and Registrars and the emphasis was always on history. We spent 2 weeks on taking history’s in various scenarios (shortness of breath, chest pain, loss of consciousness etc) and were told that with a focused history answers to 3 appropriate questions will give a fairly accurate choice of 2 or 3 possible diagnoses. Clinical exam then narrows it down and informs investigations. I think with “non-specific ” symptoms that often seem to be the presenting ones with auto-immune /connective tissue diseases it takes a little more time and clinical reasoning skills to get to where you need to be, but it’s still not rocket science.
Of course as my paraprotein is an Ig M then I’m also aware that AL Myeloid is more likely than MM.
Thanks very much for the feedback. Not sure where everyone had gone off to! I had to reset my password and it was very fussy about my password strength. Has everybody had to do this?
Have you spoken to PALS?
Hi everyone. Just read through all my posts and realised I din’t say that my para-protein is in the IgM immunoglobulin. I only have measurement for IgM, so I assume that the monoclonal protein is so small it’s not measurable. Interestingly my IgM level is right at the top of the normal limit and had gone down between March and June (I don’t know what they were in Nov last year at the Haem’ appt) but IgA and G are both low and barely in range. They had fallen between March and June. I believe I read that IgM MGUS are more likely to progress to Amyloid and that they need a closer eye keeping on, but I can’t remember where I read that or why they need a closer eye keeping on them! Brains like mush. No way I could work as a nurse anymore. We’ve moved so have a new GP but not had anything to do with them yet although my husband keeps nagging me to go and speak to somebody about my red palms. I know I should but just so tired of fighting.I’ll be having my next lot of blood tests in the next couple of weeks.I don’t know what my e GFR is because I don’t have any kidney function test results since July last year. At that time I had a spike in my Creatinine and my eGFR was 75 which I was a little perturbed about as that’s what my 80 year old mother’s is!
Sorry for delay, but I had to reset my password and it was so fussy about password strength and I was so tired at the time with brain fog I just gave up! I’m just waiting to go for my next lot of monitroing bloods and did manage to get GP (he was running 20mins behind so just wanted us out) to re refer to haematologist so have appt in October. Still have exactly the same problems which are particularly bad at the moment. Now I also have developed palmar erythema (red palms where wrist meets heel of your hand and discomfort/fullness on right side under my ribs. As far as I know I’ve never had abnormal liver function tests, but wonky liver might fit with the 2 or 3 months last year when my blood clotting was abnormal. Might also explain my pale,floating stools! GP (when he agreed to referral) also gave me Abx for my scalp “folliculitis”. It improved slightly when I was on them but came back with a vengence so at the moment I’ve got bald patches,bristles, scabs and hair loss . Also wondering if I have a urine infection as I keep getting sharp pains in either groin and a bit of cystitis feeling after I pass urine. Balance is dreadful. Went for a short walk when we went out for a drive on Sunday and I didn;t have my walking (hiking) stick . I fell over twice when I got my foot on some slightly uneven ground and just couldn’t rite myself. I’m still wondering coeliac,especially as now have the liver disease signs and have a long history (30 years plus) of depression and 15 years ago GP told me I had IBS, but never had a colonoscopy or anything.Very tired as usual but sleeping for England , which isn’t me. Joint stiffness and pain about the same.The only thing that’s good is my appetite which seems strange. It was my 54th last weekend, but I look more like 64! How are you getting on? Have you had anymore tests?
Good that you had all the tests by a fertility specialist. I think stress affects us more than we think. you hear of people who have problems trying to conceive and go through fertility treatment with no success and then after they stop all the treatment they conceive naturally. I hope that you can get things sorted and that the monster protein crawls off into a hole somewhere. Not nice feeling like your in limbo healthwise. I too had had a very stressful event ( eye witness arson of a neighbours flat in the block of flats we lived in-still ongoing Crown Court case after nearly 2 years) just before I started with a lot of this, plus I’m an only child with elderly parents who need more input nowadays, however some of the health probs have been with me for a long time.
Looking forward to hols especially as it’s pouring down here today !
Keep me updated,
Best Wishes,
Susan xx
Lucy, so sorry about your miscarriages. Not surprised you were stressed and anxious afterwards.
I don’t know much about MM and all these protein levels etc even though I was a Clinical nurse specialist because my area then was anticoagulation (managing people who were on anticoagulants) and Deep vein thrombosis etc so wondering if you’ve been checked for inherited thrombophilias ie <span class=”_Tgc _y9e”> antiphospholipid antibodies, lupus anticoagulant, anticardiolipin antibodies and anti-B2-glycoprotein?
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I’m feeling OK yes. Just the usual joint and muscle aches and pains, balance problems and brain fog with problems spitting my words out ! Oh, and blurred vision sometimes. Some days I just feel like my head doesn’t belong to me. Difficult to describe/explain.When there’s stuff going on which involves being organised and remembering things I get exhausted. I can manage for a while, like when we bought this house in April and spent about 2 weeks decorating from top to bottom, but then my body just seems to say “enough”. Problem is I can’t sleep if I go to bed early (before about 12.30) and I always wake at about 7am, so I have to sleep in the afternoon if I feel like I need to catch up.
I was like this, only worse, over the Spring and early Summer last year and then I seem to have a good spell except in October when I had a tooth abscess and then a horrible groin abscess, but still felt relatively OK in myself until a mont or so ago when the joint pain/stiffness /clicking etc started coming back. Whatever it is seems to flare up, which, along with other symptoms is why they tested for Lupus antibody, although I had to twist their arms to get that.
I have wondered if I might have Coeliac disease or gluten intolerance as some symptoms and maybe the antibody results might fit. If I’m Vit K deficient (which I don’t know) because I’m not absorbing fat soluble Vits (my Vit D was low side of normal, but if you look at normal ranges elsewhere in the world, then abnormal) then that might explain why my blood clotting results were abnormal for a period of time last Summer. If I am then it’s not dietary deficiency as we eat lots of Vit K rich foods, a lot of them raw. I take Vit D3 but not sure if it’s had any effect as those bloods were done privately last Summer and not had them repeated. GP won’t check Vit D unless calcium is abnormal.
Susan xx
Sorry , meant to say, have they checked your urine? Mine was normal in March, but they didn’t do one in May and I thought they should have done.
Hi Lucy,
Yes, I’m thinking that it’s non quantifiable. On the May results it said ” previous non-quantifiable ……….” (Sorry- have put my results out of sight delibarately until after hols). I guess I haven’t been diagnosed with MGUS either then. When I got the phone call from surgery out o fthe blue to go and have bloods done I asked GP to call me and she just kept saying it was “insignificant” and “probably normal for you”. Wasn’t sure if she was mixing up insignificant with unknown significance.
My abnormality is IgM kappa and was first noted in November last year.
I’m not under follow up by a haematologist.
What triggered your investigations? Are you well in yourself?
I’m 53. Had other tests such as Lupus antibody and Rheumatoid factor and all normal, as is thyroid function.
Susan x
Hi Lucy,
Well, yes, but only because I asked for a print out, and then they haven’t given me the full results from March, so I’m a little confused. I’m astounded actually. GP has never mentioned anything about the paraprotein ,explained what they mean, or asked to see me to see if I have any new symptoms etc (not sure what symptoms if any are recorded because they were determined everything was due to anxiety)
We’re changing GP’s because we’ve moved again (Oh Joy-criteria for new GP is a decent car park as doesn’t seem to be much point in looking for a decent doctor) . That’s why I wanted all my results but you’d think I was asking for the bloomin crown jewels.
I do know that I have an M MGUS which are apparently slightly different from non M MGUS and I don’t think it’s gone up since March, but not sure which result I should be looking at!
My M immunoglobulin is near the high end of normal, but G and A are just to say in range at the lower end of normal. Albumin is continuing to drop, and total protein slightly, so Globulin going up slightly, but don’t really understand why, but I know Albumin falling/low albumin is one of the things that might be associated with a poor prognosis, but I think my Kidney function is OK now, but not sure what the trend is. I like my blood results in hand so I can see whether even if they’re normal, they’re on an upward or downward trend. Don’t know what my last FBC was. Red blood cells have been right at the lower end of normal for about 2 years.
I’ve read loads and have a better grasp of things but don’t really understand my results. We’re off on holiday on Wednesday and when we come back I think I’ll contact the Consultant Haematologist I used to work with as a specialist nurse. He’ll explain. he know’s I’m not stupid! I get frustrated when GP’s don;t explain and share things. I know what the British Society for Haematology says about following up with MGUS and they aren’t doing it!
One thing I do know is that I’m coping less well with warm weather ,especially if I do anything! Not sure if it’s just low BP (I do have a fairly low BP and prone to going a bit woosy if I stand up too quickly etc) but a few weeks ago we went for a walk and it was fairly warm. I felt awful for the last half mile. Felt like I had to concentrate really hard to walk in a straight line and lightheaded and just really exhausted. When we got home I bent down to undo laces and when I stood up everything went black. Didn;t pass out, but closest I’ve ever been to it. Be interesting to see how I cope next week in Spain.
What stage are you at? Yes , the waiting is awful. Reading the symptoms of MM (and in case of M MGUS, Myeloid is awful. And feeling like the people who’re following you up aren’t doing it properly is frightening.
xx
Hi Cygnet,
Thanks for the reply. I spoke to the GP yesterday and the blood test in March was positive ie has gone from “a possible small band in the gamma region” (and haematology laboratory suggesting it was checked in 3 months) to having a measurable quantifiable paraprotein requiring serial bloods 3 monthly for a year in March.However, GP surgery didn’t tell me that in March! I’d laready spoken to the Haematologist (who I saw in November) secretary and apparently GP faxed the blood results through to them for advice. She’s sending me a copy of the letter they sent to the GP she said they’d also sent a copy of the letter to the haematologist at my local hospital but said I didn’t need to see a haematologist at the moment apparently. Of course, she’s not aware of my symptoms now! I can’t give any numbers, but I did ask and my urine was clear. I’ve just had bloods done today and think they must have done kidney function and full blood count as well as the one for electrophoresis, so I’ll be asking for copies of both sets of results when those are back. Unfortunately (or fortunately, whichever way you look at it!) we’ve just moved and I need to change GP.
Just have to wait and see.
