[simon1971]

Could my MGUS really be Waldenstrom's?

by simon1971 on Sat Sep 20, 2014 4:03 pm

Hello,

I'm a 43 year old UK male who was diagnosed with MGUS in July 2014 and have gotten into a bit of a mess over which specialist I should be seeing.

I previously introduced myself in the forum in this discussion thread, but here is some information on my background. Since the start of 2014 I developed musculoskeletal pains around my rib cage and sternum following a bad viral condition, and after check ups by a cardiologist, gastroenterologist, rheumatologist and more latterly a hematologist, I was found to have a paraprotein in my blood (IgM M-spike of 1.9) and a borderline low white blood count. I was also found to have a very low vitamin D level but I don't know the significance of this.

The MGUS diagnosis was confirmed a couple of weeks later when a BMB was carried out which confirmed the IgM M-spike at 1.5, and I was told I was low risk (10%) of progression. Unfortunately I wasn't told exactly for what I was at risk of (non Hodgkins lymphoma was mentioned at a prior appointment) and, more crucially, CT / PET scans weren't deemed necessary nor was any urine analysis. Also I wasn't told what level my plasma levels were at.

Leap (or should that say crawl) forward a couple of months and my condition is starting to take a nose dive and I'm wondering what I should do next. Bear in mind that UK local GP doctors don't have extensive knowledge of blood disorders and appear more interested in dealing with fatigue related ailments). My present symptoms include:

• Lots of bone pains (shins especially, breast bone, ribs, ankles, hips and elbows)
• Muscle cramps in calfs and something behind back of knee
• Bruising easily on legs
• Sore bloodshot eyes
• Abdominal pain / swollen tummy
• Cold fingers
• Foamy urine
• Light headed
• Recurrent cough / infection

I've been reading about a condition called Waldenstrom's macroglobulinemia and I'm wondering whether this seemed plausible (I mentioned it to my GP and she thought highly unlikely!) or whether it's simply from the MGUS? I think I'm starting to think that it would be a good idea to get a second opinion from a dedicated myeloma / mgus specialist. We have one close by at Oxford University, but was wondering what others thought.

Any wisdom people are prepare to share on any of the above would be sincerely and gratefully received.

Thank you,
Simon

[Toni]

Re: Could my MGUS really be Waldenstrom's?

by Toni on Sat Sep 20, 2014 4:35 pm

Simon,

Thank you for posting. Firstly, I would highly recommend you find out what was the actual percentage of plasma cells from your BMB. Secondly, a bone scan / DEXA scan should have been done. (If I can, I will try to link an article about what tests are recommended for MGUS screening).

I would either go back to your original oncologist / hematologist or request a second opinion by a myeloma specialist. I am not well-versed on the health care system in the U.K. so I do not know the process by which you would request a second opinion, but it sounds like this could be an option to you as you mention it in your post.

It is difficult to evaluate disease states based on symptoms, so while you may have some concerning issues, one cannot make a diagnosis unless testing is done. To that end, a second opinion is highly useful and your M-spike is a test which substantiates that action.

As a personal aside, I too have MGUS which was just diagnosed this past spring. They did all the blood tests and the bone scans but did not do a bone marrow biopsy (BMB). Among MGUSers, it is not uncommon to not have a BMB, so it is a bit surprising that in your case they did the BMB but not the scans.

Sometimes it's difficult to not worry or to notice some unusual new "symptom". Having had all three tests done helped me tremendously in feeling confident we have a good grasp of what's going on with my health.

Interestingly, my vitamin D levels are very low and I currently take 2000 IU for it. Don't know why, as I spent a good deal of time in the sun this summer.

I will try to link a copy of that article about proper screening for MGUS. You may find it quite helpful.

All the best and keep reading and posting to the Beacon!

[Ian]

Re: Could my MGUS really be Waldenstrom's?

by Ian on Sat Sep 20, 2014 4:47 pm

So sorry you're going through so much, Simon.

Toni makes a lot of suggestions. One thing that also would be good, however, is if you could clarify what units your M-spike is measured in. In the States, they typically report paraprotein (M-spike) level in g/dL, while in Britain, the numbers are usually reported in g/L. It makes a big difference.

[Toni]

Re: Could my MGUS really be Waldenstrom's?

by Toni on Sat Sep 20, 2014 4:59 pm

This is a link to the article I referred to earlier.

"Study Suggests MGUS Patients Receive Inadequate Evaluation, Follow-Up, And Treatment," The Myeloma Beacon, August 22, 2011.

[simon1971]

Re: Could my MGUS really be Waldenstrom's?

by simon1971 on Sat Sep 20, 2014 5:22 pm

Thanks Ian / Toni for taking the time to reply, having somebody to talk with who's been through something similar is priceless - so thank you again.

In answer to your questions, my insurance policy in the UK should pay out for referrals to a specialist so long as its done through a local doctor so I will ask this week to go to see a separate myeloma hematologist for some bone scans. If that doesnt happen, I'll make another appointment to go back to my original one as you mention, though his administrative skills weren't a particular forte (I haven't yet received written confirmation of the BMB results 2 months later, and he hasn't yet entered these onto our National Health register either ).

My m spike was 1.5 UK measurement, so presumably g/L, and the original hematologist kept saying this is low and asymptomatic - another reason why I'm so confused just now, when I've got more symptoms than you can shake a stick at! From what I understand, it's only when the diagnosis progress to smoldering myeloma or multiple myeloma (>30 g/L I think) that people believe in the UK that symptoms are apparent.

Regarding the vitamin D deficiency, I'm also taking a supplement of the strength mentioned. The naturopath mentioned that my low levels could be something to do with my gallbladder removal I had a few years prior. This lady has also got me on magnesium chloride, vitamin B3, vitamin K, vitamin C plus some stuff for chronic fatigue (d-ribose etc).

Thank you again,
Simon

[Dr. James Hoffman]

Re: Could my MGUS really be Waldenstrom's?

by Dr. James Hoffman on Sat Sep 20, 2014 11:50 pm

IgM MGUS is a very unique form of MGUS. There are many ways that it is different. It almost never progresses to myeloma. IgM myeloma is incredibly rare. If it progresses to symptomatic illness, it is nearly always to a form of lymphoma, most commonly Waldernstroms. Therefore, tests like skeletal survey are often done, but unlikely to be truly useful.

It most be noted that IgM MGUS patients can develop symptomatic illness related to the MGUS, but in less direct fashion. For example, cryoglobulinemia is a condition where the abnormal antibodies produced in the MGUS cause symptoms such as rash, kidney injury, and can be occasionally associated with cold extremities. Foamy urine can be a sign of protein in the urine (mostly albumin) that can be seen in amyloidosis, another condition that can be caused from a MGUS, and more specifically here IgM MGUS.

A MGUS by definition causes no symptoms. If symptoms occur, it is no longer of 'unknown significance'. If you are having symptoms, or are becoming unwell, you should certainly see a specialist in these illnesses that can rule out any connection between how you are feeling and the abnormal antibody.

Hope this helps and that you get some answers soon.

[Toni]

Re: Could my MGUS really be Waldenstrom's?

by Toni on Sun Sep 21, 2014 12:16 am

Dr. Hoffman,

This is why I am so grateful for all the expert advisors on this forum. IgM is very unusual and has very different presentation than IgG or IgA. I completely glossed over this and only noted "MGUS"

Simon, thankfully there are wonderful advisors to the Myeloma Beacon to help us all with this very complex and challenging disease process.

Please do keep posting so that we can continue to support you and also learn along with you.

[simon1971]

Re: Could my MGUS really be Waldenstrom's?

by simon1971 on Sun Sep 21, 2014 1:36 am

Thank you Dr. Hoffman for taking the time to respond and for providing some pointers,

Your reply raises some additional questions for me.

First, is Waldenstrom's slow progressing, and could it go undetected in a BMB, as the majority of my symptoms have come about post the procedure, and I was told I was considered low risk (borderline low lymphocytes and neutrophyls)?

Second, I've never heard of amyloidosis before. What would be the gold standard way of identifying and testing for this, and is it something that a UK hematologist would be familiar with?

My quandary is that in my particular town we have a consultant hematologist visit but no dedicated cancer center. If I have (or am heading towards) a rarer form of cancer, I'd want to be referred to a town that has its own unit. I believe that the Oxford University Hospitals in the UK (our nearest city) has this, though I'm not 100% certain.

How should I proceed to find an expert in this field over here that could assist in respect to both of the above conditions?

Thank you again,
Simon

P.S. - Not sure if its related but I've developed a really bad cough in the last 48hours and a painful swollen tummy.

[Dr. James Hoffman]

Re: Could my MGUS really be Waldenstrom's?

by Dr. James Hoffman on Sun Sep 21, 2014 7:41 am

It seems unlikely to me that you are dealing with Waldenstroms, as the disorder does not usually develop rapidly and your M-spike number is a bit low for symptomatic disease, and your 'acute' symptoms, like cough, etc, are unlikely to be related.

In terms of finding an expert in your area, amyloidosis should be known to a hematologist who focuses on plasma cell diseases such as multiple myeloma. Oxford seems like a good bet to me. A biopsy of the abdominal fat, or perhaps kidney if there is a lot of albumin in the urine (to explain the foam), could be diagnostic.

Good luck getting some answers.