[misswoosie]

54 year old with IgM paraprotein (M-spike)

by misswoosie on Mon Oct 30, 2017 6:57 pm

I was referred to a haematologist last year because of prolonged blood clotting times. I'd been back and forth to the doctors over previous year or so with tiredness,upper body muscle weakness, weight loss, "balance" problems, brain fog, scalp problems (sores, hair loss etc), tingling in fingers , heart beat irregularity, shortness of breath for no apparent reason and various joint pains.

As I have a long history of depression, was peri-menopausal and an ex-nurse, GP's were keen to attribute everything to anxiety.

The bloods done by haematologist showed clotting (after being abnormal for at least 2 months and through 4 blood tests) was normal, however because of symptoms she tested for paraproteins. The results showed a query band of abnormal protein in the gamma region and in her letter to GP it was suggested it needed to be monitored every 3 months.

At that point all antibodies were normal, including lupus and rheumatoid arthritis.

GP has never communicated with me regarding any of this or the significance and as I was continuing to have symptoms , some worsening and skin/dental/sinus infections needing ABx and not under follow up of a haematologist, I requested a re-referral in August and was seen earlier this month.

It has been a constant battle trying to get blood results (all!) from GP surgeries and the fact that we've moved 3 times in the last 3 years hasn't made things easy, but here are some results over the last 6 months. I've not got first ones from last November or most recent ones from this month done at haematology clinic, but I'm going back in 3 weeks for follow up.

Ranges are in brackets and have changed slightly for IgA and G but not IgM. All dates are this year (2017):

Result (Ref Range) March May Sept
Ig G (g/l) (6-16) 7.5 6.9 6.7 (5.8-15.4)
Ig A (g/l) (0.8-4) 1.01 0.92 0.89 (0.64-2.97)
Ig M (g/l) (0.71-2.3) 2.26 2.09 2.48 (0.71-2.3)

Here you can see that IgM level has increased steadily and is now above normal range, whilst IgA and IgG levels are falling, but still just within normal range.

March 2017 - Paraprotein IgM Kappa
May 2017 - New paraprotein, IgM Kappa - non quantifiable
September 2017 - Known paraprotein, IgM Kappa 2.1

Serum Beta 2 microglobulin has been normal at each test

Only have one result for serum free light chains which is from September

Serum kappa free light chain - 14.59 (3.3-19.4)
Serum lambda free light chain - 9.24 (5.71-26.3)
Serum kappa-lambda ratio - 1.58 (0.26-1.65)

Urine has only been checked once in March. It was just a random sample, not 24-hour collection. I was told it was normal. I thought the haematologist would have tested it again, but he didn't.

He seemed particularly concerned regarding the neurologic symptoms I have considering my age (i.e., staggering about , tingling in fingers, concentration problems, and odd sensations on bottoms of feet, i.e. feeling like there's something stuck to my foot or sock is bunched up; started in right foot occasionally maybe 5 years ago, but it's now constant and starting in left foot now too).

I have always had low blood pressure and suffered from problems with dizziness if I stand up too quickly especially if I'm hot, but now, apart from the fact that I sweat really easily and profusely, especially my head, it's particularly bad and a couple of times I thought I might black out. I've never had 24-hour blood pressure recording done or 24-hour ECG (regarding heart beat irregularities). Loads of ECG's, but they're always normal (surprise surprise!).

I don't work, but 18 months ago I was briefly working 2 days a week for 6 hours as a cleaner / house keeper for a family and after I'd been there for a shift I was wiped out for the next 24 hours. Could never manage to work 12-hour shifts as a nurse!

I'm aware that IgM-type paraproteins can lead to things other than myeloma (i,e,, lymphomas and amyloid­osis) but not really "up" on any of it it as nobody has ever explained anything.

[Multibilly]

Re: 54 year old with IgM paraprotein (M-spike)

by Multibilly on Tue Oct 31, 2017 9:45 am

Hi Misswoosie,

Welcome to the forum! I'm sorry to hear about your situation.

I would suggest that you read through this excellent article to better understand just what might be in play and how to start to get to the bottom of what's going on here:

J Mikhael, "Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein", The Hematologist, Sep 15, 2014 (full text of article)

IgM-related disorders are not that common and it pays to seek out a specialist who focuses on plasma cell dyscrasias such as myeloma (which would also include expertise in Waldenstrom's macroglobulinemia, amyloidosis, lymphomas, etc.). Other forum members in the UK may have some suggestions on where to find these specialists.

[misswoosie]

Re: 54 year old with IgM paraprotein (M-spike)

by misswoosie on Sat Nov 18, 2017 8:57 am

Thanks Multibilly. I'll read that article.

I was originally seen at a large teaching hospital, as I was given a choice and chose them because the referral was regarding clotting and I knew they had expertise. This "re-referral" was sent direct to the haematologist at our local hospital because they'd been copied in on letters sent to the GP by the first one. I think that they'll just be a "general" haematologist, but rest assured, If I'm not happy I'll ask for a second opinion.

I'm due back this week coming for follow up and results of the other bloods (bone profile, antibodies, LFT's and anaemia profile I think, but only from asking the phlebotomist). Probably due to have immunoglobulins checked again too.

[Foundry738]

Re: 54 year old with IgM paraprotein (M-spike)

by Foundry738 on Mon Nov 20, 2017 7:37 pm

Hello Misswoosie,

If the result "September 2017 - Known paraprotein, IgM Kappa 2.1" is the M-spike, then it will probably take a bone marrow analysis to begin to sort things out. If it's not too late, this point should be raised with the new doctor.

All the best,
Steve