[Grid]

Am I missing something?

by Grid on Mon Sep 12, 2016 9:19 pm

Thank you! I am so glad I have found this forum, but it’s a shame that we, as MGUS sufferers, have to resort to this because no one in the medical profession is taking us seriously!

I have MGUS and was diagnosed a few years ago after being told it was multiple myeloma and then no, it isn’t. I’ve had that many tests it’s not funny. Thousands spent.

I now am battling to find answers to unexplained rib pain since July. I've had a nagging pain for over a year, but very isolated, lower right side, but it has progressed very quickly and the pain is so bad it can hurt to move and is now all round.

I am so tired all the time and not just because I can’t sleep well but because of the pressure on the ribs which are also sore to touch in places.

I see a rheumatologist who has tried to tell me its fibromyalgia. Rubbish. That’s only because he doesn’t know what else to label it as. I had to ask for a chest CT, bone scan, and blood tests, which he agreed to do, but surely I shouldn’t have to ask?

Scans were ok, blood tests show an increase in the serum free light chains with free kappa 27.1 mg/l, free lambda within normal limits, and kappa-lambda ratio 2.6 with a recom­menda­tion that the tests are repeated in three months’ time, along with urine too.

Also my neutrophils (white cells) are borderline neutropenia. I have constant colds and coughs but my blood MBL is low so my immune system isn’t brilliant anyway.

I had a bone marrow biopsy two years ago where the conclusion was “in the absence of other organ involvement, the marrow may be consistent with MGUS”.

May?

I don’t see my haematologist until November. I have to admit that my stress levels are rising! Does anyone have any advice please?

[Multibilly]

Re: Am I missing something?

by Multibilly on Tue Sep 13, 2016 5:49 am

Hi Grid,

Welcome to the forum. It sounds like you are from the UK.

You said "my blood MBL is low so my immune system isn’t brilliant anyway". "MBL" usually stands for "monoclonal B-cell lymphocytes", and those aren't something that you wish to have in your blood in the first place. Does MBL stand for something else in your case?

It would be helpful if you let folks know your

- Bone marrow plasma cell percentage
- M-spike (also called: paraprotein level, M-protein level, abnormal protein band 1)
- IgG, IgA, and IgM levels
- Hemoglobin level
- Creatinine and calcium levels
- What kind of MGUS isotype you have (e.g. IgG-kappa, IgA-kappa, IgM-kappa, etc).

Please include units of measure and normal reference ranges.

[torifrog]

Re: Am I missing something?

by torifrog on Tue Sep 13, 2016 11:31 pm

Hi Grid and Multibilly,

I'm afraid I don't know enough to give you any advice, Grid, but I did find something that may be of interest to you, Multibilly. I suspect "MBL" in this case relates to "Mannose-binding lectin". "MBL-deficient individuals have increased susceptibility to infection" (source).

[Multibilly]

Re: Am I missing something?

by Multibilly on Wed Sep 14, 2016 6:23 am

Thanks Tori. I never heard of that marker, but it makes more sense.

[wbayman1959]

Re: Am I missing something?

by wbayman1959 on Thu Sep 29, 2016 10:04 pm

I understand your frustration. I was diag­nosed in April of this year with MGUS. I have had ex­cruciating rib pain on and off for a couple of years. Some nights I just lie like a cornered animal, I am in so much pain and so scared. My PCP never even took an xray and told me not to do Pilates – which I didn't do to begin with. After that, I never went back to him for my rib pain.

After I was diagnosed with MGUS, I asked the oncologist what I could do about the pain in my ribs and was told there was nothing to indicate a problem in my ribs. I have since been seeing a myeloma specialist who also cannot find any reason for me to have rib pain, which is interesting to me because I have read a lot that sometimes rib pain is the only presentation of multiple myeloma and that many people with MGUS experience rib pain.

In the meantime, I suffer, so if you get any answers, please share!