[Buskerscat]

Diagnosed with MGUS - but doesn't explain my symptoms

by Buskerscat on Mon Nov 21, 2016 9:46 pm

Hi,

I have just found this forum, having just been diagnosed with MGUS. I'm a 41-year-old female in the United Kingdom.

I have just received results of blood tests following high levels of immunoglobulin in the last lot of tests. The doctor thinks I have MGUS and said it should be a relief for me that it's not myeloma. Which obviously it is, but having googled MGUS - apparently there are no symptoms with it.

But my original symptoms that I've had for 6 months and went to the doctors for originally still haven't been explained. They are:

1. Glands up all the time (first doctor said glands weren't up when she examined me) basically that feeling you get when you are going down with a cold, on a daily basis, but not developing into anything.
2. Constant back and/or abdominal pains, worse at night. If I'm lying on my back my back hurts, if I'm lying on my front my stomach hurts. It's not excruciating, but bad enough to wake me up, so I now take pain killers before bed.
3. Diarrhoea every day for 6 months, but this seems to have gotten better since a holiday (vitamin D?)
4. Weeing a lot more than normal.
5. Thrush / itching - 18 months I've had this, usual treatment doesn't work. Swab came back clear
6. Breathless
7. Itchy head (!)
8. Achy knees if I run or do exercise
9. Bad memory/concentration (could just be age -) 40
10. Pins and needles in my fingers regularly.

Prior to these symptoms I had six months of back-to-back colds.

Also, every single year for the past 20 years, without fail, I get a really persistent cough that lasts the entire winter - 3 or 4 months. Its finally been diagnosed as asthma, but without any real tests except peak flow, which shows my lungs aren't functionally quite as they should be for my age.

I just wondered if there is any one that could offer advice, has been in this position, or could just shed some light for me. I'm just not sure what to do now as the doctor basically just pre­scribed painkillers and recommended antidepressants (as did previous doctor), but I'm not depressed. Also, initially there was mention of camera tests for my stomach, and being referred to a res­pi­ra­tory specialist for the cough, but once all blood tests / x-ray / ultrasound came back clear, ex­cept the immunoglobulin being high, there has been no mention since.

Sorry for the long, rambling post. Feeling a bit of a hypochondriac, but just don't feel right and feel like the doctors are done with me (have to go back in 3 months regarding the immuno­glob­u­lin).

[btdyq5]

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by btdyq5 on Tue Nov 22, 2016 8:26 pm

Hi there,

I'm no expert on plasma cell dyscrasias or monoclonal gammopathies, but from perusing this site for several months I've definitely noticed a multitude of posts by individuals with MGUS who report symptoms. I'm not sure all the symptoms you report could be attributed to MGUS, but it's definitely not uncommon for people to experience certain symptoms like peripheral neuropathy in associ­a­tion with MGUS. I suppose the ultimate question, however, is whether any specific symptoms are directly attributable to MGUS, or if they are just unrelated issues that happen to be co-morbid with the MGUS in a given individual.

[Multibilly]

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by Multibilly on Wed Nov 23, 2016 7:35 am

Hi Buskerscat,

Welcome to the forum.

Btdyq5 is right in that some MGUS patients can and do experience symptoms. But your list of symp­toms seems pretty lengthy.

You said your doctor "thinks" you have MGUS. But note that a high immunoglobulin (IgG, IgA, IgM) level by itself does not necessarily indicate MGUS. Did the doctor run a serum protein electro­phoresis (SPEP), serum immunofixation, and a serum free light chain assay? Do you know those results and could you share them, along with your immunoglobulin (IgG, IgA and IgM) levels?

If you don't have copies of your lab reports, I'd suggest asking for copies of them so that you do know what your key MGUS marker levels are (M-spike, serum kappa and lambda free light chain, IgG, IgA, IgM, hemoglobin, creatinine and calcium levels – the last three values can be found on your metabolic and CBC panel tests).

Also, since you are experiencing back pain, did your doctor discuss getting an MRI or other radiological image of your spine?

[Anet vT]

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by Anet vT on Wed Nov 23, 2016 9:31 am

Hello,

I would just like refer to item #10 in your symptom list. Perhaps you are suffering from carpal tunnel syndrome. My consultant said that it occurs frequently with multiple myeloma. A simple operation on my wrist resolved the problem completely.

I hope you get your various issues sorted out. Can you go to a specialist centre for a second opinion?

I am also British but have lived for decades in the Netherlands.

Annette

[Buskerscat]

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by Buskerscat on Wed Nov 23, 2016 3:16 pm

Thanks so much for taking the time to reply. Yes I had an SPEP test and had to provide a urine sample (not sure about the other two tests), and it was as a result of these that I was told it wasn't myeloma but likely MGUS.

I also had a very thorough ultrasound which came back, according to the doctor, 'perfect'.

The list is pretty lengthy isn't it, but I felt very much like because it wasn't myeloma that I should just be grateful it was nothing serious. I was just prescribed pain killers for my back and other symptoms not mentioned. However, it was only when I googled MGUS that I couldn't attribute these symptoms to that diagnosis!

Annette, interesting about the carpel tunnel, this could well be it. I didn't know you could have an operation for it.

Thank you Multibilly for advising what marker levels I need to know. I am completely clueless to it all, so this has been a huge help, thank you. I am going to try to get copies of them. I guess I feel I need to go back with specific questions, but I am still quite confused by it all!

Thank you for your help.

[Multibilly]

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by Multibilly on Wed Nov 23, 2016 4:01 pm

Putting aside that you have an M-spike (this would be the abnormal protein level found on your SPEP) and keeping in mind it never makes sense to try to sort out a medical diagnosis on the internet, your constellation of symptoms brings to mind fibromyalgia or some sort of autoimmune disease. See: http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms

There are a few folks on the forum that have been diagnosed with both MGUS in conjunction with such a disorder. But you would really need a rheumatologist or neurologist to help sort the latter.

Note that an ultrasound wouldn't tell you if you have any skeletal issues due to a monoclonal plasma cell disorder. You would at least an xray to help sort that out.

[torifrog]

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by torifrog on Wed Nov 23, 2016 11:48 pm

I noticed you commented regarding increased urination, thrush, breathlessness, and a few other symptoms which may fit with a pre-diabetic or diabetic cause. Have you had a blood glucose test done at all? It's usually done during a full / complete blood count, but results may not be con­clusive and may be worth further investigation if your doctor thinks there could be a risk, or if there is any family history.

Good luck.

[Buskerscat]

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by Buskerscat on Fri Nov 25, 2016 8:34 pm

Hello,

Thank you for your replies. I have managed to get a printout of my blood tests. There are loads, but with regards to my immunoglobulin levels, they were:

On 1 November, 2016:

G level - 9.7 g/L
A level - 1.38 g/L
M level - 3.03 g/L

So I thought the M level was low, but then on the 11 November, 2016, the levels were

G - 10.07 g/L
A - 1.50 g/L
M - 3.37 g/L

So they have all gone up in 10 days, is this a bad sign, even though they are still quite low?

Urine creatinine level is above range - 31.4 mmol [2.55-20.0]
Urine protein / creatinine ration (XaEMS) - 5 mg/mop

Urine protein electrophoresis (460) 'urine protein electrophoresis shows a trace generalised proeinuria. There is no evidence of monoclonal protein.'

Others that stand out a bit for me are:

Serum amylase level - 111 [28.0-100]
Serum total protein level 77 g/l [60.0-80.0]
Serum albumin level - 50 g/l [35.0-50.0]
anti-tissue transglutaminase level - 0.4 [0.0-7.0]
Transferrin saturation index - 15% [15.0-50.00]

Torifrog,

Do you know if the blood test for diabetes is haemoglobin AC1 level, as this test states: not assayed 'insufficient'

If anyone is able to take the time to interpret these results for me I'd be really grateful

Many thanks.

[torifrog]

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by torifrog on Sat Nov 26, 2016 3:17 am

An HbA1c test measures the amount of glucose that has glycated to haemoglobin (basically stuck to it) in the previous 6-12 weeks, and is often used to track diabetic control generally. Non-diabetic measures aren't usually requested, but should come back under 5.7. Since the test hasn't been done, nothing can be gleaned. An on the spot blood glucose test can be done, or a fructosamine test (similar to HbA1c, but a smaller amount of time covered). If there is any family history, I strongly suggest you discuss the potential with your doctor.

Best of luck ... and if it turns out you do have pre-diabetes or diabetes, there is plenty of information available online, or I and others here can surely help as well (I've been diabetic since I was 4 years old in 1969).

[Buskerscat]

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by Buskerscat on Sun Nov 27, 2016 4:55 pm

Thank you Torifrog. Diabetes does run in my family, so that is something I will ask about.

I am going through my list of blood tests and highlighting those that fall outside the rec­om­men­da­tions to take back to my GP.

With regards to the M level increase of 3.03 g/L to 3.37 g/L, is there any cause for concern with this increase in just one week, or is this a very low number?