Question about myeloma…Doc David ???

I was diagnosed with MGUS (Monoclonal Gammopathy of Unknown Significance) last fall. They found a protein spike in my blood when I was hospitalized for GBS. MGUS can cause neuropathies and can sometimes develop into Multiple Myeloma. I had a skeletal survey, serum electropheresis and urine electropheresis, a bone marrow biopsy, abdominal ultrasound and other blood tests to rule out multiple myeloma. I had serum and urine electropheresis done again in March. Since there was no significant change, I now will go once a year and have a bunch of tests run to make sure the gammopathy is stable. Hang in there — it’s good to have a thorough doctor!

Leanne

Dear Stacey!

Among all the tests they did on me when I was first hospitalized in 2001 was a skeletal bone scan. I was not afraid that it might show something wrong, because I didn’t feel ill in a way that I would suspect anything cancerous going on. My skeleton was fine, but several years later they found that I was suffering from a kind of plasma-cell cancer, Monoclonal Gammopathy of Uncertain Significance (MGUS), which in some unfortunate cases, like mine, attack the myelin sheat on the nerves, causing pain and tremor, and sometimes also paralysis. Being benign in itself, MGUS might develop into a malignant plasma-cell cancer, so one has to keep MGUS patients under observation.

People with my reason for CIDP related nerve damage are known to benefit greatly from Rituxan\Fludarabine treatment. Two years after my treatment I’m 80-90% OK. I feel I’ve been lucky compared to “ordinary” CIDP patients, because my treatment worked better for me than IVIG does for many CIDP’ers.

Keep smiling Stacey, maybe the tests for abnormal amounts of B-cells in your system will be a blessing!

I recently visited a hematologist because of a “protein band in the gamma range” found on one of my blood tests. The doctor basically said that the lab analysis of this result was spurious. He then went on to tell me that something like 0.3% of the population has MGUS, and it doesn’t indicate anything in itself except that it appears that something like one in five of the people with MGUS go on to develop myeloma. MGUS itself doesn’t cause anything — that is why it has “Unknown Significance” as part of its name.

I’m not a doctor, and the figures are from some very quick notes I took, so they could be wrong. The explanation as a whole (except for the 0.3% and 20%) does concur with the explanation from my neuro, though.

I have had the bone scan as well, and it didn’t show anything. If unusual proteins are detected, it is probably better to have a hematologist analyze those results.

IMO, the reason a neuro would start looking for myeloma is because they think your case is unusually resistant to treatment, or because it is unusual in some other way, or possibly just because they are extremely diligent and want to explore and rule out various causes of your neuropathy. If you have CIDP and MGUS, it doesn’t really seem to tell them anything significant about the CIDP, although it is interesting.

In my case the MGUS causes the nerve damage, because the IgM produced by the abnormal number of B-cells binds to a protein called MAG (Myelin Associated Glycoprotein), part of the myelin sheath that can be described as the insulation around the nerves, marking it for the macrophages to destroy like they do when a bacteria or virus invade the body.

Normal B-cells “die” when they have produced the IgM they are supposed to, but in my case, they don’t die, but go on producing their “flawed” IgM. It’s true what Keith says that in most cases MGUS doesn’t do any harm if it doesn’t develop into myeloma, but I have been in contact with several MGUS patients that have great problems with fatigue.

So I think that in many cases the “Significance” is not as “Unknown” as the name suggests! Underneath my signature I have the complete name of my diagnosis, where the PDN stands for “Proteinaemic Demyelinating Neuropathy”.

The reason why Rituxan was the right treatment for me is that this chemo-drug kills off the B-cells, and the the amount of IgM goes down and the attack on my myelin sheath is halted. Then it slowly but surely grows back!:)

I had GBS — not CIDP, so we are different that way. I have proteinuria, not sure what hypoalbuminemia is. MGUS is just another autoimmune thing that sometimes is associated with CIDP and neuropathy.

Keith.[QUOTE]If you have CIDP and MGUS, it doesn’t really seem to tell them anything significant about the CIDP, although it is interesting.[/QUOTE] The question is that it may mean that you have a neuropathy similar to CIDP in its symptoms that may be caused by the MG – monoclonal gammopathy or paraprotein. Usually known, certainly in Europe, as PDN or Paraproteinaemic Demyelinating Neuropathy. My web site about this is with my signature.
In the case of some of the PDN it is now understood how it happens.

Hence Allaug’s explanation.[QUOTE]In my case the MGUS causes the nerve damage, because the IgM produced by the abnormal number of B-cells binds to a protein called MAG (Myelin Associated Glycoprotein), part of the myelin sheath that can be described as the insulation around the nerves, marking it for the macrophages to destroy like they do when a bacteria or virus invade the body.[/QUOTE] Better to ignore the US! It is the monoclonal gammopathy that is significant.

For about 50% of those with IgM but without the anti-MAG element plus those with IgG or IgA it is the case that the explanation is as yet unknown but it is suspected that some other factor as with Allaug’s may be the cause.

Mine is the rarest of these – the IgA one and with mainly sensory damage. Remarkably I met another IgA sufferer at the UK GBS SG conference 9 days ago, having overheard his conversation with the famous Prof Richard Hughes and the keyword ‘paraprotein’! He has much motor damage.:cool:

[QUOTE=kenspdn]Keith. The question is that it may mean that you have a neuropathy similar to CIDP in its symptoms that may be caused by the MG – monoclonal gammopathy or paraprotein. Usually known, certainly in Europe, as PDN or Paraproteinaemic Demyelinating Neuropathy. My web site about this is with my signature.
[/QUOTE]

Since you don’t have CIDP, I would think that my take on this still holds true. Making an extremely rare condition the basis for a generalization about a less rare one isn’t particularly good argumentation, is it?

Keith:

My neurologist, one of the best in Norway, said that I had CIDP for many years, and he could not understand why none of the usual treatments for CIDP either didn’t help much or in fact made me much worse. It wasn’t until a hematologist had a closer look at my blood and bone-marrow (biopsy), that he found my MGUS, and since my neurological symptoms were so severe, they tried out chemo-thearpy (Rituxan\Fludarabine). So I was mistakenly diagnosed CIDP (and i would say “mistreated” because of that).

Keith. [QUOTE]Since you don’t have CIDP,[/QUOTE] Like Allaug when my neurologist after many difficulties then felt, after a sural nerve biopsy, that I had CIDP life went crazy on steroid treatment. That led to reinvestigation and the resultant PDN diagnosis.

The line between them can be very fine. Prof Hughes has been heard to say that there should always be a serum electropheresis test when CIDP is suspected in order to rule in or out the presence of MG/paraprotein.:)