One patient with glioblastoma still alive nine years later
by Lindsey5103 on Sun Nov 21, 2010 05:07 PM
I've been seeing a rheumatologist for over a year with a suspected auto-immune disease however have not received a diagnosis. We've been treating Ankylosing Spondylitis since March due to severe pain in my lower spine and rib cage. I obtained a second opinion last month and I just received lab results today that indicated an abnormal protein band 0.3 High. Interpretation reads: Abnormal protein band is detected in the gamma globulins and may represent a monoclonal immunoglobulin or light chain.My Rheumatologist didn't seem concerned. I googled it because it was new and not a test I'd seen run before, and wound up here. I'm a little concerned that the Rheumatologist didn't say anything other than we needed to keep an eye on it.
I had an appointment with my PCP due to fever, cough, etc yesterday so I showed him all of the lab work I received on Thursday. He immediately pointed out the abnormal results and said that can indicate Multiple Myeloma. He further stated I would probably need further testing to rule it out but because of my age he was sure I probably didn't have it. He is getting a referral ready tomorrow for a Hematologist/Oncologist.
Some background: I'm 25 and was healthy until I had a very rough pregnancy (Hyperemesis, pre-ecclampsia and emergency C-section) in August 2008 after which I developed all kinds of fun symptoms. Migraines, numbness in fingers and toes, extreme weight loss (I dropped 65 pounds in 4 weeks and wound up about 30 pounds lower than my pre-pregnancy weight). I was sent to a neurologist due to the severity of my migraines and an MRI then came back normal. Based on symptoms, he ran some labs and I came back ANA positive;1:630; Speckled. So off to the Rheum with suspected Lupus I went! I hated him and felt like he didn't really care much about my case until March when he realized I had mentioned back pain every appointment as a symptom. He ultimately started treating me for Ankylosing Spondylitis. I've had rib cage pain starting in my pregnancy that was initially suspected to be gall bladder. After I had my daughter it was not just right side pain and occasionally the left. My Chiro thought it was stemming from inflammation in my lower spine causing my rib muscles to contract. I had a 24 hour urine last year with 345 protein levels present.
I saw this Rheum for over a year while waiting on getting into the one I started seeing last month. At my first appointment, he ran extensive tests with a lot of abnormal labs (most of which I've had and was expecting) Low C3 and C4 compliments, protein in urine, positive ANA etc. But the protein band was new and a test that hadn't been run previously.
Just a little nervous I guess. The past two years have been a health nightmare for me with many doctors and a lot of unanswered questions.
by mmsurvivor on Sun Nov 21, 2010 09:08 PM
Welcome to our forum. You have a right to be concerned. While MM occurs mostly in older persons, it has all of a sudden started showing up in young people.
You sound like your physical symptoms could point to the MM side and the abnormal protein is just one more sign. However I am not the doctor but seeing a heamtologist or a specialist in MM is important your age. Bone Marrow is the definitive test for MM if all the other tests fail. Please stay on top of this as MM is always hard to diagnose and confused with dozens of other ailments. On the plus side it would rule out that you have MM. The new medicines for MM are giving people longer lives and better remission. There are several young people on this site and they are progressing well with the attack on the disease. Keep us posted. Blessings MMS Jan
by summerluvr on Sun Nov 21, 2010 10:11 PM
I'm a young person (32) who has MM.
My story is a bit similar was seeing neurologist for a year, and prior to that many other doctots who couldn't figure out and kept saying I was healthy.
eventually I got very sick, like had to have a blood transfusion, because of my low hemoglobin, and was fainting etc. so off tho the ER I went, and saw new doctors who finally ran the SPEP test which showed the spike. Mine was very high, like 9.5. (here we messure g/L so it was 94 g/L)
Back pain is common with MM you could get your doctor to order a skeletal survey (plain exrays of the spine and skull and hips) to look for specific lesion caused by MM.
With MM there is no complicated tests or anyting. The basic tests are the CBC, the SPEP (you had this show an abnormal spike), the plain exrays, and the bone marrow biopsy.
by Anna9563 on Mon Nov 22, 2010 12:38 AM
Hi Lindsey, Welcome to the group. Sounds like this Dr. sending you to a new Dr. is trying to help. Did he say if you had a high protein count in the blood or urine? I think the only way they can confirm is with a bone marrow test. If I remember right with Dad that's what they did.
Keep us informed.
by Lindsey5103 on Mon Nov 22, 2010 01:09 AM
I have protein present in both blood and urine, apparently. I have the abnormal protein present in my blood and I've had protein in my urine for about 2 years now.
I'm glad my PCP is referring me on to a Hematologist. I respect and like my Rheumatologist in his field, but they love the watch and wait approach and once I saw that and the PCP confirmed it could be an indicator of cancer - I'm not a fan of the watch and wait approach!
I just want to know what's wrong with me. It's so hard to go back and forth between medicines and treatments and diagnosis.
Thank you guys for the comments, I'll keep you all informed.
by artsyamerican on Mon Nov 22, 2010 02:26 AM
Heh Lindsey - Is your M spike 1.03 or .03? If it is 0.3 that is extremely low....and you would be considered to be at the MGUS stage which can remain benign for a lifetime. Keep us posted!
by Lindsey5103 on Mon Nov 22, 2010 04:34 AM
It's 0.3 - Typo :) Test Reads: Abnormal Protein Band 1. -- 0.3 High
by summerluvr on Mon Nov 22, 2010 04:32 PM
Did they do a IG analysis... so do you have something that says IGG, IGA, IGM or something and the values? Because this will tell you more of the nature of the spike than just a spike. Some IG's are more commonly associated with different conditions.
by Lindsey5103 on Mon Nov 22, 2010 09:20 PM
As far as I know they did not do further testing. I asked for copies of all of my labs from my initial visit to provide to my PCP because he likes to try and keep track of everything and didn't see anything like that.
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