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Low globulins/immunoglobulins

by jumpinjiminy on Sun Sep 23, 2012 10:16 pm

Hi all. Dr. Google led me to this site and boy, what a gem it is. I've been going through this oddness for a couple of years now, have been tested for many things, mostly neurological but a lot of autoimmune.

The suspicion was MS until I went to the ER for severe abdominal pain, which led to a GI consult and a low globulin level on blood labs. Followup with the GP and an SPEP showed low immunoglobulins, low alpha 1 and low beta globulins. Along the way, I've also had a couple of high blood calcium levels and was treated with 40mg of prednisone for a few months for a suspected case of optic neuritis. Many of the symptoms responded to the treatment, but my doc kept thinking this was something systemic or metabolic.

Well, he found it. He has good instincts. It's been 2 years since the big blowup of symptoms that sent me off in every direction getting brain and spinal MRIs, evoked potentials, and blood labs up the whazoo.

We're just waiting on the immunofixation test to come and show which immunoglobulin is off. He mentioned my albumin was good, my blood protein was good, and those alpha's and betas didn't much matter to him.

Would you have any idea why he might refer me to an infectious disease specialist next? Are these labs indicating a possible infection? He felt if I had an infection the antibodies should be high, not low, but says the infectious disease specialist is the pro in these things.

jumpinjiminy

Re: Low globulins/immunoglobulins

by Lys2012 on Mon Sep 24, 2012 2:01 pm

Hi I just wanted to post because before I got very sick and finally diagnosed with Multiple Myeloma, MS seemed like what I had based on my symptoms. after many specialists and many tests (and many times being told I was fine, or stressed, or anxious) I ended up in the ER anemic and sick (kept passing out). looking back i had many other common myeloma symptoms (frequent infections, bleeding issue-nosebleeds, night sweats but never put them together)

The ER doctor did the standard blood work (CBC etc) that they do in the ER and noticed big problems (though he did not tell me at the time) and sent me home saying I needed urgent follow up by internal medicine. The clinic told me to get chest xrays and many types of blood work including the infamous SPEP test that is used for multiple myeloma. IN the ER they told me my blood protein was "10x the normal range" .

My understanding is that most with Myeloma will have the same characteristics on the SPEP which is a "spike in the gamma region" this is called an M-Spike and is almost always caused by multiple myeloma. one of the IG proteins will be high, and the others tend to be low in the gamma region. I can't comment on the other proteins on the SPEP test (which in your case seem to be low?)

Have you done a 24hour urine test? It is traditionally used in the initial work up to find some rarer multiple myeloma's that are not detectable on the SPEP.

Lys2012

Re: Low globulins/immunoglobulins

by jumpinjiminy on Mon Sep 24, 2012 2:14 pm

Thanks for sharing your story, Lyse. No, I've not had any other tests but the SPEP that verified the low globulins and this immunofixation (serum), which I won't know the results of until tomorrow. No M-spike was present on the SPEP.

My blood proteins have always been normal (except lymphos drop low sometimes) until this summer. I'm wondering if all of this could be from having had a course of steroids last spring. I don't think my adrenals are up to speed yet, seeing as how a colonoscopy brought on an episode of hypoglycemia, which has never happened before.

As you well know, the waiting is the killer, but we get better at it with time, don't we? :lol:

jumpinjiminy

Re: Low globulins/immunoglobulins

by jumpinjiminy on Mon Sep 24, 2012 2:21 pm

Gosh, I can't edit because I wasn't logged in.

I have night sweats on occasion too, but have always written them off as hormonal. My whole thing started with a fever of unknown origin, which is now gone. I think I had it off and on for five years or so, plus frequent infections. And it does seem that my blood has changed. I bleed and bruise more easily, and bleed longer before clotting than before. It happened during the steroid treatment, which is what I've been thinking caused it.

All little things of probably no significance. With the lab results I get, my symptoms just make me look like a hypochondriac. My doc has always been good about accepting my experience as real, but we have gone through that depression/anxiety cycle as well. It seems to come up with every new specialist referral.

jumpinjiminy

Re: Low globulins/immunoglobulins

by Lys2012 on Mon Sep 24, 2012 3:54 pm

My multiple myeloma specialist said the reason it took so long to figure me out is because I came in through the side door! MY blood work, typical for multiple myeloma, and the ER doc was willing to look past the fact that I did not look the part of a typical multiple myeloma patient. Once they were looking for it, my diagnosis was pretty straight forward, and quick.

I'm not sure if taking steroids could affect you long term? Steroids are often used as part of multiple myeloma treatments.. The steroid most often used in multiple myeloma is Dexemethasone, and I heard somewhere that dex is almost 10x stronger then Pred. I was on 40mg of dex off and on for months, as part of my chemo. I'm in remission now and not on any meds.

I suggest you get a referral to a hematologist, not sure about an infection disease doctor. Maybe internal medicine? They were good with my case and figured it out fast.

Lys2012

Re: Low globulins/immunoglobulins

by jumpinjiminy on Mon Sep 24, 2012 4:43 pm

I think there may have been clues in my bloodwork going back to 2007. In looking over them, I've frequently had low lymphocyte counts and low anion gaps with normal albumin levels. Once there was a low RBC level. No MRI's have shown skeletal lesions, so I guess that's a plus, unless they missed them. Just had another c-spine done this summer.

I've been the hot potato patient here for two years now, getting tossed from one doc to another. Have seen just about every specialist that could test for causes of the neuro issues, but GP had this suspicion all along. He frequently asks me about bone pain. This time was pressing along my spine. In 2010 did a chest xray, and in 2011 did a Dexa scan for a baseline that showed osteoporosis at age 43.

Whatever this is, I've had it for a long, long time. It's now finally revealing itself. Been a long, long road so far. I got to where I could handle the possibility of MS, and never pushed for looking for cancer, thinking I was too young for it and there weren't any signs of it. Just tons of neuro symptoms along with generalized systemic symptoms. All of those scans and no tumors anywhere. Didn't know much about multiple myeloma until I started reading after this SPEP came back abnormal.

Even while on steroids last year, my globulin levels were normal. This is a new development in the last year, but the anion gap has been low on almost every test since 2007.

jumpinjiminy

Re: Low globulins/immunoglobulins

by terryl1 on Mon Sep 24, 2012 4:45 pm

As previously stated by Lys2012, see a hem/onc or better yet a myeloma specialist. By the way, the SPEP is useful for about 80% of myeloma patients, but about 15 to 20% of us are light chain only. We don't have a traditional M-Spike.....but we have the same dangerous disease. Our disease is generally tracked by the serum FLC assay and urine testing and BMB's. Good luck.

terryl1
Name: Terry
Who do you know with myeloma?: self
When were you/they diagnosed?: August 10, 2011
Age at diagnosis: 49

Re: Low globulins/immunoglobulins

by jumpinjiminy on Mon Sep 24, 2012 7:41 pm

Terry1, thanks for the advice. I can't see anyone without a referral from my GP. I'm still curious why he wants to send me to the infectious disease doc - who is an internal medicine specialist - but I thought all docs started out as internal medicine specialists. Is that not the case?

So this next test could be negative, which would prompt a urine protein electrophoresis. Say they both came back negative, then what would be the next step? Could I breathe a sigh of relief then?

On edit: I'll bet he's the go-to guy around here because he's board certified in geriatrics, internal medicine and infectious disease. He's probably got a great background, experience and education for dealing with this type of thing.

I found out, internal medicine deals with the prevention, diagnosis and treatment of adult diseases and management of complex cases. No wonder they like to send me there. lol

jumpinjiminy

Re: Low globulins/immunoglobulins

by jumpinjiminy on Tue Sep 25, 2012 4:54 pm

Results came in. IFE was negative for M-proteins. What can I expect to happen next? Haven't heard from the doc's office and my next appointment is in 2 months.

jumpinjiminy

Re: Low globulins/immunoglobulins

by jumpinjiminy on Thu Sep 27, 2012 7:17 pm

Thanks for the help. I was referred to a blood specialist.

jumpinjiminy

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