Wednesday, March 6, 2013

Not a Zebra!

I have had frequent fevers since the summer of 2009. When I saw Dr. R in December he suggested I see an infectious disease specialist to determine if the fevers I had been experiencing could be caused by something other than the smoldering myeloma. I saw Dr. M who thought that I might be a Zebra and could possibly have a periodic fever syndrome.

Well... I don't! The genetic testing was finalized last week and I have no mutations. I do not have a periodic fever syndrome. I am not a zebra.
No zebras here.
 


Dr. M said, "You don't have any of the 'KNOWN' mutations for a periodic fever syndrome."  Heh. I don't think he likes being wrong!

After I saw Dr. M in January he requested as "homework" that I record my temperature when I first wake up and then again between 7-8PM which I have been doing quite diligently. When I spoke with him regarding the results of the genetic testing, I mentioned to him that I seemed to be having fewer fevers than I usually do. I had only had a temperature over 100.4 four times since mid January and my temperature was below 100.4 by the next morning. He was happy to hear I'd been, “cooler than usual” and added "you need to come see me more often!" Hah. He cured me!

Not really. I had a temperature of 101.6 last night. And the beat goes on....

But anyway, Dr. M still wants me to go to see this fever specialist at the NIH. Not sure if I want to do that (Mo doctors, mo problems! Remember?) or even if the team would still want to see me for the study because I don't have any of the genetic mutations. He still wants me to have blood work when I first get a fever (CBC with differential, full chemistries (electrolytes and liver function tests), a CRP, a ferritin and triglyceride levels). Not entirely sure what he's hoping to "see" in this blood work that would be different when I have a fever. He said the monoclonal protein being produced by the MGUS/SMM clone could somehow be short circuiting the way my body regulates my temperature and it triggers/allows the periodic fevers to occur.  
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7 comments:

  1. AnonymousMarch 7, 2013 at 3:24 PM

    Elizabeth, I have had fevers for about eight years now without a diagnosis. My current episode began again in December, and I have had it pratically everyday since then. My sister had a stem-cell transplant for MM in 2011 and is in remission. I just had an immofixation test (my doc meant to request the SPEP) that shows a trace monoclonal band in the IGG LAMBDA region. My IGM AND IGG are in the normal range, but my IGA has been low at least four years. I am thinking that our fevers are associated with this disease.

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    1. ElizabethMarch 8, 2013 at 1:20 PM

      That's interesting... have you been diagnosed with MGUS?

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    2. AnonymousMarch 9, 2013 at 6:43 PM

      Hi Elizabeth, my name is Patty so I will include it in further messages so you know it is me. I am still working with my GP. I asked for the SPEP test, and he did not think I needed it since I already had the Immunofixation test. So at this point, I do not know what number my M-spike is currently. He has ordered the urine test, but I do not know if it is random or the 24 hour yet. I have taken this before because I am diabetic, so not sure if this is why he ordered it or because of the blood test. I am currently 53, my sister was diagnosed with MGUS at approx 45. I had an aunt who passed away at 59 in 1978 of MM. My aunt flown out to Bethesda to go to a hospital there, I am wondering if it is the same hospital you visited. I know a lot was not known about MM back then (even now there isn't). My doc has referred me to an immunologist for now so I am hoping that doc can weigh in on what to do as well. I am going with my sister on Wednesday for her check up at Stanford where she had her stem cell transplant. I plan on asking her doc what his opinion is on what I should do. I would think doctors would be interested in two sisters at a "fairly" young age to present with this disease as well as an aunt. Do you have a personal email address I can message you because I am so interested in your case because of your fevers and your young age (I am children in your age group so it concerns me). I can also share what my sister has experienced in her care at Stanford. If not I understand that you may not want to share your personal email.

      Sincerely,
      Patty
      P.S. My sister is a follower of Margaret's Corner and she also is involved in a local MM group in our town.

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    3. ElizabethMarch 10, 2013 at 11:09 AM

      Hi Patty,

      Could you please leave your email address here and then I can email you? After you post your address and I email you I can delete the comment so your personal email won't be on here...

      Thanks,
      Elizabeth

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    4. AnonymousMarch 10, 2013 at 5:17 PM

      This comment has been removed by a blog administrator.

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  2. UnknownMarch 8, 2013 at 6:40 AM

    Elizabeth,
    I have a high CRP but not any fevers related to the SMM. My gut feeling is that the fevers have nothing to do with the SMM. I have had fatigue and some bone pain in my left elbow and hip joints, that "may" be related to the SMM or the injections of Zometa OR the hip pain is from the Biopsys! If I were you I would not worry about the fevers and I probably would not do the NIH fever specialist....
    Mo doctors mo problems! Is the right attitude! Have a great weekend!
    Keith

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