[misswoosieParticipant]

Hi,

I’m new here. I was referred to a Haem by GP because blood tests for a suspected DVT detected abnormal (extended) blood clotting times which after being checked by GP twice over the next month were still abnormal. I’d seen my GP several times in the previous year because of fatigue and extreme tiredness, joint pains,rib pain, irregular heart beats, shortness of breath, balance problems etc etc. I  had a tooth abcess , huge groin abcess and bad scalp folliculitis all within about 3 weeks of one another. I also had some abnormal kidney function tests (raised creatinine) which returned to normal after about 3 months.  All the bloods the Haematologist did were normal apart from the ? MGUS. By the time I saw the Haematologist most of the symptoms had improved and in the last few months I’ve been much better. Recently however I’ve noticed I’m feeling tired, getting short of breath and feeling tired more often. My scalp is really sore with spots. It’s my understanding that by definition you have to be symptomless in order to be diagnosed with MGUS, rather than smouldering myeloma. Is this correct?

Thank you.

[cygnetParticipant]

Hi and welcome – although I’m sorry you’ve had to join us ( if you see what I mean!)

The difference between MGUS and Smouldering Myeloma relates to certain criteria (you can find elsewhere on this website) but I would  recommend you contact your GP and ask  if you should to go back to Haematology.

You say you are awaiting repeat test results so maybe you have an appointment already?

Many people with MGUS do  seem to get symptoms of tiredness, reduced immunity etc and if your levels of paraprotein  (pp)are low and nothing else seems amiss,  it seems some clinics refer the patient back for monitoring  via their GP ( my health authority does this.)

My hospital clinic also only uses MGUS and  active Myeloma (ie needing treatment) as categories so Smoldering  status doesn’t exist here in Kent ( even when we meet the accepted criteria!!)

Please do ring the nurses on the website if you have questions or concerns – they are really helpful and let us know how you get on 🙂

C xx

[misswoosieParticipant]

Hi and thank you Cygnet. I spoke to GP reception yesterday morning regarding bloods and was told GP had said no futher action required,so I assume that means no para protein. The haematologist (in letter to GP after my OP appt in Nov last year) suggested that GP should check blood and urine in 3 months time and re -refer to haematology if they were positive. I’m sure there’s something going on but without any “positive” blood results seem to be stuck. GP’s seem to be very good at putting evrything down to anxiety and “your female age” and , although you might think it would be helpful, the fact that someone was a nurse (practitioner latterly) for 27 years seems to be a hindrance. I wonder if in areas that still use the clasification of “smouldering myeloma” there’s a distinction between the monitoring and follow up for MGUS versus smoldering myeloma? I’ve lost a lot of faith in the NHS  over the last 15 years both as a nurse and a service user. Thanks again for your reply.

 

• This reply was modified 7 years, 1 month ago by  misswoosie.

[misswoosieParticipant]

Hi there. Feeling somewhat shocked. Just received a phone call from GP’s surgery asking me to make an appointment to have bloods checked as they’ve had a letter from Haematologist saying that(according to receptionist) “bloods need to be checked 3 monthly in the first year”. Now I understood that’s the case with a positive test (although surgery told me no further action was required when I called for repeat blood results in March-see above post), but would they also check every 3 months for a year based on the blood test in January which showed a possible Gammopathy? Have asked GP to call me and she’s ringing on Wednesday morning. I’m still “not right”.

[graham-cParticipant]

It would be wrong for me to advise you or make any recommendation or diagnosis but my experience may give some perspective to your situation.

I am a male of 64 years age and I have been MGUS for over five years and I currently have blood tests every 4 months with a call call to confirm the results to me which I make a note of. I consider that I am in the lowest level of risk and I have not received any treatment and I am quite happy with this. Though the level of paraproteins is significant, what will always be of concern is when there is a steady and sustained increase over a period of time. MGUS itself is not considered a health risk, other than the risk of it developing into full blown myeloma which can only be ascertained by long term monitoring.

For you information the readings I take are IgA Paraproteins, eGFR, Lambda FLC and Kappa/Lamda ratio. The IgA in paraproteins and Lambda in FLC’s are specific to my MGUS. It’s handy if you ask for the largest paraprotein figure and ask them what type that is and the same for FLC’s (free light chains) and then you can speak their language in future. I have five years of figures.

Last year my paraproteins went up to 10.3 and the hospital got excited but I know other people here have had much higher readings. It seems that some other background tests came up as abnormal and, combined with the small spike, got them excited.

If there is a point to be made, it is that if you have significant symptoms and your MGUS is steady and, using the word designed to offend patients – ‘unremarkable’, then possibly the underlying cause lies elsewhere. The background tests apparently meant that I had a poor prognosis but, since my paraproteins has returned to normal, it was impossible to say to what the prognosis related.

Personally, as long as I remain MGUS, then if I have symptoms that I can’t put down to myeloma then I will go to my GP with it as a new ailment.

My last results were Paraproteins 4.1 FLC’s 157.6 Lambda/Kappa ratio 0.05 eGFR 63

I only mention them so that you have something to use as a comparison. They are ‘unremarkable’ but significant physical symptoms (which I don’t have) would make a difference.

[misswoosieParticipant]

Thank you. Health hasn’t been my normal for over a year now. I don’t know what the reuslt of the last blood and urine test for paraproteins was ( beginning of March). The GP surgery told me know further action was required when I called for the results, so I assumed there were no paraproteins. In Nov last year the serum electrophoresis report said there was a possible small band in the gamma region ans suggested the test was repeated in 3 months.

When the surgery called yesterday, they said the GP had asked them to call and get me to book an appt to get bloods rechecked. When I acted surprised/confused they said that the haematologist (where I had the first plasmaphoresis test done) had sent a letter in April saying that I needed to have my bloods done every 3 months for the first year. The GP receptionist said it looked as though they’d sent the March blood results to the Haematologist. I don’t understand what’s taken so long. I do know that after feeling quite good for about 6 months over the last 2 weeks I’m starting to feel exhausted, joints/bones ( hips, knees,shoulders) are painful and stiff again and I look like the proverbial.  My gums are also sore and inflamed and after improving seem now to be badly receeding again.I’m also experiencing problems with my balance and coordination and vision again. The last time I felt like this was about a year ago and my creatinine, although within normal ranges, was much higher than usual for me and my eGFR was about the same as my 80 year old mothers! That settled down within abiut 3 months and that coincided with me starting to feel better. As I mentioned in my first post on here, one of my blood clotting “times” was prolonged.GP tested that about 3 times over 2 months and it never normalised, however it was normal last November  at Haem’ appt. Personally for me (always ran with a haemaglobin of around 140) I’m anaemic at 124. My last red blood cell count was just in the normal range and my albumin was right on the lower end of normal. I think I’ve lost about a stone and a half in the last 18 months ( dropped 1-2 dress sizes) and I’m not trying at all. I also seem to have developed sensitivities whcih I’ve never had before. My scalp doesn’t seem to tolerate any shampoo. I’ve had coal tar for psoriasis, anti fungal/medicated for ? fungal /bacterial infection and none helped. I get red, painful spots which then become scabs. It hurts ans my hair is like straw and falls out.Again, this was really bad about a year ago and had settled down quite a lot and hair was looking and feeling so much better, but now in the last 2 weeks scalp is horrendous and hair is like it has no elasticity or anything.

Sorry to bang on, but I know I’m not well and it’s soooo frustrating. I’m the type of person who can get up at 8 am and work physically gardening or painting and decorating till 7pm. I have far  more energy usually than my husband who’s 9 years younger than me! 2 years ago we were in Portugal pruning 100 Olive trees with chain saws!

About 12 years ago I was misdiagnosed as having IBS which for a period of 2 years continued to gt worse despite a healthy diet , drinkig plenty of water etc etc. It got to the point where I was taking 2 days a month of work because I was in so much pain. Then I was rushed into hospital (the one I worked in as a Clinical Nurse Specialist)) with severe abdominal pain. They told me I had a pelvic  infection despite my temperature and all blood tests being normal and started antibiotics and sent me home. I said I wasn’t happy and that I wanted a scan. They told me to come back in 2 days. Bingo- ruptured ovarian cyst and torsion of ovary which was by then necrosing. All my bloods were abnormal-anaemic and kidney function severely compromised. 2 hour operation. Almost needed Intensive care. That’s one of the reasons I don’t trust that they’re always doing the best thing for you.

Anyway GP is calling me in the morning so I’ll ask if they’ll recheck my kidney function and Full blood count as well as the paraproteins. I’m going to call the Haematologist’s secretary and see if they’ll tell me what the letter said or ask for a copy.

Again sorry to go on.

[cygnetParticipant]

Hi Miss Woosie

Sorry to hear you are having such a stressful time.

I think what has happened here is no-one explained to you that your possible positive result would mean your Haematology department would monitor you three-monthly for a year.

I hope you get some answers and start to feel better soon.

Love and hugs,

Cx

[misswoosieParticipant]

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.

[luciferParticipant]

Hi,

How frustrating for you! The lack of communication is astounding. Did you get any results back yet? The waiting is so horrible.

My follow up tests are in November, had a trace reading in January and May.

Hope you’re ok.

Best wishes,

 

Lucy xxx

[misswoosieParticipant]

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

 

[luciferParticipant]

Hi,

It’s horrible to feel like you’ve to chase up on these medical professionals. It seems, from what I’ve read and my own experience, that many GPs have never even heard of MGUS.

As for me, I’m 37 and I had bloods taken in January. One of the thyroid tests had a low background activity reading which can suggest low immunity so it was reflexed for quantitative immunoglobulins and a SPEP test. The levels of immunoglobulins were fine but a trace of a tiny igA lambda paraprotein was found in the beta 2 fraction. The tests were repeated in May and I’m still waiting on a few. The results I do have are normal, apart from the trace that’s still present and can’t be quantified. The haematologist and immunologist say that there’s a chance it could disappear eventually so retesting in November. There’s a chance that it could hang around also so will just have to see.

Healthwise, I’m lucky to feel very well. I get very anxious about these tests however which I’m finding harder to deal with more than anything.

Your m protein/paraprotein level must be quite low? I’ve heard there can be fluctuations in readings too.

All the best and try to enjoy your holiday!

 

Lucy

 

[luciferParticipant]

Forgot to say, I haven’t been formally diagnosed yet. MGUS has been mentioned as the trace paraprotein is still there. The hematologist has sent a letter to GP to repeat test in November.

[misswoosieParticipant]

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

 

[misswoosieParticipant]

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.

 

[luciferParticipant]

Hi,

My urine has been checked but the results aren’t back yet. The only result I have from that is the normal protein level is very low, which is good. Could be another few weeks for the urine electrophoresis as there’s a backlog apparently. Had the 24 hr collection one…vile. Also had full skeletal x rays, all normal thank God.

 

I had two miscarriages last year and afterwards I felt very stressed and down. I thought initially I had a hormone imbalance after the miscarriages but now I realise it was stress. I went in Jan to my GP to get my hormones tested before my husband and I tried again. I was feeling a little bit sick at that time, a virus maybe. My neutrophil count was a little low at 1.92 and I had a strange rash around my neck for two weeks previously and then it resolved. I thought it was an allergic reaction but it seemed to last ages.

 

One of the tests was for thyroid and they noticed a low background reading and so a serum protein electrophoresis test was done and my immunoglobins were checked to see if my immune system was ok. My levels were fine but a “trace of a tiny iga lambda monoclonal band” was detected.

 

I didn’t hear about this until the end of March. Repeated the tests in early May and the trace is still present. Repeating the test in November.

 

It’s important to get all your info together and keep on the back of medical professionals! I hound them, I’m sure they dread me! You have to be your own advocate.

 

Hope you’re feeling ok.

 

Best wishes,

 

Lucy

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