As this forum has been a valuable source of information and clarification in the last months, I wanted to contribute and share a story as well to give others some insights on our experiences.
How the story began:
My wife is in the mid 30s and has been to a regular checkup at the end of last summer. During checkup it was found that she has Hashimoto - an autoimmune disorder with hypothyroidism. She has been "unusually" sick during the time of that checkup (some fever on/off over some weeks, once a skin rash she had never before - both of them disappeared a short time later on their own) and the doctor "just" ordered some more blood tests during the checkup to rule out anything serious.
1st blood test, by GP:
When receiving the results of that additional blood tests, the GP immediately called my wife in and organized an appointment with a specialist on short notice. The GP was pretty serious and concerned about the result (told us not to open the envelope before meeting the specialist), as we then learned from the specialist (for blood/cancer related disorders) that the blood results indicated multiple myeloma or MGUS IgM kappa - which should then be analyzed in detail with a 2nd blood test from that specialist.
Not to mention that the time between having this 2nd test done and getting the detailed results have been horrible, we were using the time in between to get as much input as possible and to learn about the topic (even so Googling conditions is a topic for itself with lots of pros and lots of cons). It has been a very tough time for us.
2nd blood test, by specialist:
When finally receiving the results, we were told that the condition of "MGUS IgM kappa" was confirmed. The overall level of IgM was about 300 xy - they are using different units in Germany, but it converts to 0.3 g/dL (1.5 g/dL being the line of classifying as a risk factor).
So for what we could have possibly expected, MGUS with a spike of 0.3 g/dL was nearly the "best" option. Also, the light chain ratio was balanced, leaving us with one out of three risk factors for progression (the one being the fact that it is IgM instead of IgG).
The specialist told us that we should not worry at all - the level of M-protein is pretty low, normal ratio of light chains and the rate of progression is 20% in 20 years (which is correct according to all available studies and input in this forum). We should re-test in 6 months.
3rd blood test, by GP:
Some weeks/almost months ago, we went to get the retest done (not with the specialist this time, but with the GP as proposed by the specialist). Hoping again for the best (meaning: no elevation of the M-protein, still stable light chains), we were incredibly surprised to get the feedback on the result sheets stating that "No evidence of monoclonal gammopathy" was found! Also, all other related measures are within regular range.
This is amazing news of course and was a great relief! Only in this forum I have read about MGUS disappearing in rare scenarios before.
As of now, I still have a couple of thoughts or open questions that have been on my mind:
- I´m still struggling with the 2nd test (the first one done by the specialist) at all: Measuring the (total) IgM does in no way give any information about the level of M-protein in there. So at the point in time of this 2nd test, the M-protein in retrospect could have been anything between 0 and 0,3 g/dL - would that be correct? (As M-protein is a part of the total protein, the "normal" protein being the 2nd part).
- When being explicitly asked after this 2nd test, the specialist denied that having the tests done shortly after an infection could cause any high level IgMs. He told us that "having [Total] IgM above the norm" is a proof for the MGUS diagnosis. I strongly disagree with that. IgM levels rise and fall as our body start to fight infections - that's what I have learned from various sources. So every person having an infection will have elevated IgM for a short period of time - being no evidence of an MGUS condition.
Also, of course this still does not explain why the M-protein seems to have disappeared at all (we´re asked to retest again in some months).
Also worth noticing (as I believe in a strong connection of all this events): Due to the Hashimoto diagnosis and low vitamin D levels (playing an important role in immune defense), my wife went to see a homeopath in the meanwhile (between the 2nd and 3rd test). She treated her with vitamin D supplements and an additional homeopathic medicine - resulting in my wife being able to stop taking medicine for her thyroid right now as measured levels are all in range!
The whole topic of MGUS has been tough for us and we did get the feeling that our intensive "research" helped us to understand more than the specialist actually told us.
All the best for everyone having to be a "member" of this club.
