• Anonymous
      August 12, 2006 at 6:12 am

      I was diagnosed over two years ago with CIDP with Monoclonal Gammopathy.After finding this site and reading the threads and informative links (THANKS!), I am wondering what test are performed to rule out Myloma.I have reveiwed all my medical records, and I don’t see any test other than liver profile, hep profile etc…, that my doc does routinely to make sure there is no problems with my infusions. At this point, I am only concerned, because I have read that a percentage of MG’ers develope Multiple Myloma. Also my condition is progressively getting worse even with IVIG 180mg every 3 weeks and now on 40mg Pred. Is this happening to anyone else? What does the future hold?? Does anyone have a crystal ball? (SMILES)

      Thanks everyone for this site.

    • Anonymous
      August 12, 2006 at 11:10 am

      Hi Terry, welcome to the forum. It seems we have a similar if not the same variant of CIDP. Mine is called antiMAG IgM neuropathy which is an MG, a monoclonal gammopathy. Allaug in Norway who is also on this forum, has the same diagnosis. Earlier this year I saw an oncologist to rule out any malignancies. They performed a bone scan for myeloma which turned out negative. Other obvious symptoms of myeloma were missing, too. I think swollen lymphnodes etc. There were lots of blood tests but I am not sure what he was after. I am supposed to see him again beginning of next year to make sure no malignancy has developed.

      Did they perform a Serum Protein Electrophoresis (SPEP) test to see if your IgM’s are antiMAG? MAG stands for Myelin associated glycoprotein. I just wonder if you have that also because apparently your treatments are not working very well. In antiMAG IgM neuropathy the progression of the disease is typically very slow, mostly sensory loss, not very responsive to IVIG, Plasmapheresis or steroids (like Prednisone). There is one drug, Rituxan, which has been shown to be effective in cases like mine. Unfortunately, it is not (yet) approved for CIDP here in the US. There are two threads on this topic in the CIP/CIDP section. I would suggest to read them.

      You are saying your symptoms are getting worse. Over what period? Mine started very slowly five years ago. Only last year and this year my condition has been getting worse more quickly. Except recently, after the second three-months round of IVIG which I finished 10 days ago, do I finally see some improvement.

      What does the future hold, you ask? Unfortunately, there is no crystal ball. CIDP presents with so many different variations of symptoms and progression, for some even remitting and relapsing, that any prediction is impossible. Last fall, when I saw a neurologist at the University of Colorado in Denver, who correctly diagnosed CIDP for the very first time, I asked here about my prognosis. With her hand she drew a curve in the air starting high and dropping down /. “If that is the way it has been for you the past few years,” she said, “just picture the curve continuing downwarts over the next few years. That is what is probably going to happen.” Her answer was not very encouraging. I saw myself in an eletric wheelchair in 2010. Of course, at that time we did not know if treatments would make any difference, perhaps slow down the drop of the curve.

    • Anonymous
      August 12, 2006 at 1:46 pm

      Hi Terry
      – I’ve sent you a private message

    • Anonymous
      August 12, 2006 at 6:51 pm

      Terry, I, too, have CIDP with monoclonal gammopathy. I was diagnosed two years ago and have had plasmapheresis, prednisone, Rituxan and one round of IvIg. I just finished a 6 mo. repeat on my blood and urine (24 hrs.) tests. That is the way my oncologist is monitoring the progression of the MGUS. I had a very slight raise in the Igm level, but she’s pleased with the results so far.

      I moved a year ago and the new neurologist here did not think I needed to try the second treatment of Rituxan that I was hoping to get in Jan. I’m returning next week for a visit to MD and I will see my former neurologist to see what he thinks now.

      As far as the future, I try not to look ahead and worry. I’m trying to live the best I can do each day – some days better than others. My faith and trust that God will provide what I need to deal with it, when and if it happens, is my sustaining support.

      Peace and my best wishes,

    • Anonymous
      August 13, 2006 at 4:26 am

      Thank’s, guy’s. My doc checked at my insistance, and found antimag negative. My symtoms have slowly been getting worse since the onset four years ago. It took two years to diagnose.The last ten months the bottom has fell out. Last week I enrolled for disability benefits. My doc said almost the samething about the decline, but we would try to slow it down. It sounds like like I should make an appointment with an oco., but I thuoght my nuro would do that if there was a concern. Allaug I’m going to check my mail now.

    • Anonymous
      August 16, 2006 at 12:34 pm

      Earlier I mentioned that I had a complete bone scan to rule out myeloma. I just went through the thick stack of medical records and found another test that had been performed. I totally forgot about it. This was a blood test called CLLYMPAN (Chronic Lymphocytic Leukemia Pan). Here is what was being tested and my results (I am omitting results for all the different CD receptors under each category):

      [I]WORKING DIAGNOSIS: Rule out lymphoma

      [*]B-cell antigens = moderate positive
      [*]Kappa + B cells = polyclonal
      [*]Lambda + B cells = polyclonal
      [*]T-cell antigens = moderate positive
      [*]Miscellaneous antigens = negative/moderate positive
      INTERPRETATION: There is no evidence of B-cell lymphoproliferative disorder.[/I]

    • Anonymous
      August 16, 2006 at 1:00 pm

      Terry, You may find it of interest to read my web site [url][/url] .
      It is about this group of neuropathies – MG or paraprotein with neuropathy.
      It has helped others including Norb and Allaug!

      Used to be a quick link system for web sites on this forum until a few days ago. Where has it gone?;)

    • Anonymous
      August 17, 2006 at 7:01 am

      Thank’s Norb, my home nurse will be here this morning to start this round of IVIG. If she will, I’ll get her to go over all my records and see if she can find any such test.

      Thank’s also to kenspdn, I will go to this site today!!!

    • Anonymous
      August 17, 2006 at 2:04 pm

      norb, who did that cllympan test for you? which dr ordered it? i’m trying to rule that out for myself right now and am not sure which dr to ask to order that test. my cousin was just dx with aml 2 years ago-she is older then me and has all the med problems i have had except this paralysis stuff. her dr found some spots that looked like blood spots on my cousins body, so she was given this test and voila they found she had aml. strange thing is i have those same type of spots on my body.:confused: just a thought to have that test done to ro that as a cause.

    • Anonymous
      August 20, 2006 at 10:00 am

      Sorry it took so long to answer, forgot to subscribe to this thread.

      It was Dr. Kolhouse who ordered it, the oncologist/hemotologist my neurologist referred me to to rule out malignancies. It was done at the U. of Colorado Health Sciences Center in Denver, same place where I get my IVIG’s

    • Anonymous
      August 20, 2006 at 3:44 pm

      1. I did not see the oncologist after I received the lab report so I did not have a chance to ask him about the significance of the “moderate positive” results.

      2. I looked up the cost for this test. The only item I found that seemed to match was “Flowcytometry”. It was $ 1,664. 😮