[vix66]

I am really lost in these results

by vix66 on Wed Oct 14, 2015 6:44 pm

Hi,

I have got myself in a state in the past few months with test results I am trying to understand. I am just going round in circles, I am scared and I don't know where to get any information that I understand. If anyone can help I would really appreciate it. All I know is that multiple myeloma keeps cropping up when I am looking.

I am 48 female and of average build.

I have cold urticaria, I react to the cold with hives and swelling, this started a year ago. I was sent to Guys & St Thomas's in London and they did some blood tests. Cold urticaria is rare but can show up in multiple myeloma, hence having these tests.

It showed that I have light chains lambda IgG paraproteinaemia (mid/slow band in gamma region).

My ANA is medium/positive and the pattern homogeneous, It has been like this for the past year and flagged it has been followed by an ENA but this was normal

ESR has gone from 12 to 23 and this has been flagged

My GFR is 72

Serum folate low at 4.0

I have protein in my urine and have today been referred to nephrology, but no Bence Jones. Creatinine 5.8 mmol and albumin found.

I have also got an appointment to see a haematologist next week.

I had a scan last week on my kidneys, liver, and spleen; all looked ok

I have pain in my legs, I am tired and low on energy. I have problems with my back and neck. A scan showed the joints in my neck are worn (done sometime ago).

My kidneys ache most of the time.

If anyone can throw any light on anything to help I would be really grateful. I don't know who to talk to, I don't want to worry my family or make a fuss, but it's a lonely place to be when you don't know whats going on.

My doctor hasn't explained anything. I saw him for a couple of minutes to ask him to repeat the first test that had protein in it, but he just passes on messages for me to attend scans and have more tests.

I hope someone can help

[Multibilly]

Re: I am really lost in these results

by Multibilly on Wed Oct 14, 2015 9:24 pm

Hi Vix,

So sorry to see you so lost without a doc that won't explain these things. It's good you are seeing a hematologist next week.

Do you have list of titles of the test that have been performed so far?

It sounds like you at least had a serum immunofixation test that explains the statement "It showed that I have light chains lambda IgG paraproteinaemia (mid/slow band in gamma region".

If a heamatologist saw a result like the above he/she would also likely run what is known as serum protein electrophoresis test to measure the amount of the IgG paraproteins (this is your M-spike). He would also run a free light chain assay to measure the lambda and kappa free light chain values detected in your serum immunofixation test.. And for good measure, you would also get a series of quantified immunoglobulin level tests that would measure your IgG, IgA and IgM levels.

I would also go back and look at your CBC and comprehensive metabolic panels and check your hemolglobin (especially since you are tired), calcium and serum creatinine levels (not urine level creatinine). Since you had a positive outcome for lambda IgG paraproteinaemia on the immunofixation test, then its very reasonable to ask for these other tests.

As far as scans are concerned, if there is any suspicion of a monoclonal gammopathy, then one usually gets an whole-body MRI or PET/CT (or at least a full skeletal survey, although MRIs and PET/CTs are more and more replacing skeletal surveys for the purpose of initial diagnosis).

Let us know how things go next week.

[vix66]

Re: I am really lost in these results

by vix66 on Thu Oct 15, 2015 5:39 am

Hi

Thank you for your reply, I really appreciate it.

I have spent the past 5 months checking normal levels of my tests, but everything is so confusing and as I am doing it more results are uncovered.

I now have access to my medical records, tests and letters, which is new in the UK (certainty where I live) so I keep finding more results, some that are attached to referral letters. It seems quite often some results get flagged and not followed up on. I am glad I am a little more in control now as I can keep on top of it some what.

When I look at the test results for IgG 12.6g/l IgA 2.8g/l and IgM 1.2g/l they all differ slightly on all 3 tests I have had, but seem in the normal range I think.

Is paraprotein and the light chains something different? As it is has been commented on each on each test.

On one it says:

Serum immunofixation shows a IgG lambda paraprotiein band of less than 2g/l. There is no suppression of other immunoglobulins. These findings do not indicate whether the band is primary or secondary.
Then it has advice on websites for management for the doctor I presume.

They have also tried to do a cryoglobulin test, where the blood is to be kept warm, but they don't seem to have successfully managed to read the bit on the instructions about keeping it warm, so the tests have been inconclusive.

On their own all the tests don't seem that bad or that much out of range, until I look at the picture as a whole, (which is what I expect the doctors are now doing) With the paraprotein bands and light chains, the protein in my urine and kidney ache and the GFR being low, the ESR being up and the ANA being positive, its all indicating something is wrong.

I thought my symptoms were to do with other things like possible menopause (although I'm not going through it yet). I hadn't even told anyone about the pain in my legs especially as I am under consultants because of my cold condition and my neck problems, I didn't want to be classed as a hypochondriac.

I have spent 10 years with a constant itch on my shoulders, like ants crawling under my skin. It has taken over my life. I had it diagnosed last month, at last they don't think its all in my head (they were going to send me to a psychiatrist next), but now they are doing something about it. Its called Brachioradial pruritus and is to do with my facet joints in my neck. I don't think its relevant to this though, just another rarity that I seem to attract.

I will post the results next week when and if I find out anything.

Thanks again
Vicki

[Multibilly]

Re: I am really lost in these results

by Multibilly on Thu Oct 15, 2015 9:39 am

A few things.

Yes, paraprotein level (M-spike) is different than free light chain values. The M-spike only measures the amount of the monoclonal (abnormal) portion of your involved immunoglobulin, which in your case is the IgG immuonoglobulin.

It sounds like you have an M-spike of < 2.0 g/L (< 0.2 g/dL), which is a very small M-spike and is very good news and might only signal a typically benign condition known as MGUS (but only a doctor can make this call).

An IgG (again, this is your "involved immunogloublin") level of 12.6 g/L (1260 mg/dL) is also in the typical normal range. Your other immunoglobulin values are also normal and not sup­pressed, so that is all good news too.

You still do want to have your free light chain values tested and look at your CBC and metabolic panels for the other values I mentioned (hemoglobin, serum creatinine and calcium).

Again, I'm not a doc, and I'm just offering up the following things for you to discuss with your hematologist next week.

Most cases of myeloma present with a significantly elevated M-spike and the involved immuno­globulin level being elevated, so again your numbers are encouraging. But in 15-20% cases, the free light chain values tell the story, while the M-spike and immunoglobluin levels remain fairly normal. Excess free light chains with or without an M-spike can wreak havoc with the kid­neys. The free light chain assay is a simple and easy test to do.

Lastly, if you are having kidney issues and some sort of a monoclonal gammopathy (as likely indicated by your immunofixation test), your doctors should also be ruling out the possibility of amyloidosis. Testing for amyloidosis would require a biopsy of one of your tissues, ideally the involved tissue which would be one of your kidneys.

Again, this is just food for thought to discuss with your doctor and not any sort of a suggestion of a diagnosis.

[vix66]

Re: I am really lost in these results

by vix66 on Fri Oct 16, 2015 9:19 am

Thank you, you really are a wealth of information. I see you answering many posts and trying to help others with information and compassion and I think that's so kind.

I think apart from finding all the results confusing and the measurements conflicting, most of all it shocks and upsets me about how the people closest react. Mine seem to be so dismissive and trivialise everything, making me feel I shouldn't investigate and research and I am over reacting. Despite the fact if I hadn't looked into my tests my doctor would not have checked anything, even though the results were off. I hope they are right and its nothing, but it make me sad that people are so flippant about someone they care about.

I will write back when I have seen the haematologist and let you know what they say.
Thanks again

[Jer610]

Re: I am really lost in these results

by Jer610 on Sat Oct 17, 2015 11:36 am

Hello Vicki.

I too am a fellow IgG lambda. I too have cold urticaria, as well as cold agglutinin disease and autoimmune hemolytic anemia. I've had my urticaria for about 15 years and it seems to get more reactive as I age. I was diagnosed with MGUS 18 months ago, and after first posting about my initial diagnosis began wondering about possible connections of cold urticaria to myeloma.

Hope all goes well for you. You are getting some great advice here.

[vix66]

Re: I am really lost in these results

by vix66 on Sun Oct 18, 2015 3:23 pm

Hi Jerry,

Ahh so others get cold urticaria. If I mention that I am allergic or react to the cold to anyone, they laugh! I react at 16 degrees C (61 F), so not that cold either, but I manage it. I really hope it doesn't get worse with age or my heating bills will be stupidly expensive. Ironically, I lived in Austria for a few years in a ski town where it was often minus 25. This all started last September.

I see the haematologist on Wednesday and I really hope he can throw some light on all of this. I keep finding out all sorts of scary stuff, but this site and the people on it have been fantastic in helping me with my questions of that I am really grateful and don't feel so alone

I will post again with what the haematologist says on Wednesday. Fingers crossed all will be ok.

[vix66]

Re: I am really lost in these results

by vix66 on Wed Oct 21, 2015 7:20 am

Well I have seen the haematologist today.

He said I have not got multiple myeloma and all looks healthy in my bloods. Anything that had been flagged he said wasn't of concern.

I have however got MGUS, but he was very dismissive of it and told me if I have any symptoms it's something else, as MGUS has no symptoms. I did challenge that statement because of what I have read on here, but it was clear he had a different opinion. He said all I needed was to be checked once a year if my doctor thought it necessary.

As for the leg pains, he said it was probably worry?

I have been referred from my doctor to see the nephrologist on the 2nd November, but again I think the results of my kidneys are only slightly off so I am expecting all to be ok.

I am going to see a herbal specialist (who is a friend) and try and balance myself out that way and hopefully get myself in shape.

Thank you for all the advice and help

[Jer610]

Re: I am really lost in these results

by Jer610 on Wed Oct 21, 2015 12:20 pm

Hello Vicki.

Sounds like you and you doctor have a pretty good handle on things. Welcome to the Watch and Wait Club. The check-ups can be a little nervy with anticipation, but symptomless is a very good place to be.

Having several fairly rare autoimmune issues going on at the same time as MGUS always has me questioning and wondering about the connections. Whenever I discuss my cold urticaria with my primary, he always reminds me that I'm lucky I live in California with it's mild weather rather that the north or east. I make sure to layer up during cold, windy, or wet, and swim only in heated pools. I've made several bad decisions with regards to swimming in the past and nearly ended up in emergency (I'm a slow learner).

I can imagine the weather can be very tricky at times in the U.K. They say that those of North European descent are particularly predisposed to CU (I descend from English, Irish, Swedish, and Norwegian). Anyway, stay warm this coming winter and remember that Multibilly, Toni and the other good folks on this site are always there to give you good, solid answers and support.

[vix66]

Re: I am really lost in these results

by vix66 on Thu Oct 22, 2015 7:53 am

Hi Jerry,

I was so pleased with the no multiple myeloma result, I was on cloud 9, but yesterday was a roller-coaster day emotionally. I also found out my daughter-in-law needs to have chemo after having a baby and a cyst the size of a rugby ball 3 months ago (the cyst ruptured and it was cancerous). Grandson is ok but she had apendics and lymph nodes removed, and although told no cancer, still has to have chemo, which could stop her having any more kids. And my neighbour and friend died last night from a brain tumour. We knew it was coming but it still hurts. So in the end, it wasn't such a good day.

Regarding the cold urticaria, have you tried taking antihistamine, especially if you are going swimming or you know its cold? I even manage to go on holiday skiing in -25. I take a couple a day if I think I may need to and I don't really get affected then. It catches me out sometimes as I forget about it and don't wrap up enough; like you, I am learning. But antihistamine works for me (I still wrap up though, just in case).

I will stay on this site, as you have all been so kind with your advice and I will be watching and waiting with fingers crossed.