Remission

I was diagnosed in 2010 with CIDP, and I can't do IVIG. In summer of 2014 Dr.s at KU med stated no CIDP at this moment and changed dx to MGUS WITH neuropathy. But they wanted me to go to Mayo Clinic for additional testing. So Mayo does another EMG and now they of course say I have peripheral neuropathy, and possibly polyradicalneuropathy (but they can't verify in this setting). Even with a slightly elevated protein count in spinal fluid.

Tramadol has kept the pain in check and is even the reason it seems like I am in remission. I still fall, have gait problem, vision problems, and suffer from major fatigue.
I can't the doctors to understand that it is the Tramadol that has been the change, I still have all the symptoms just some are to a lesser extent, and some have worsened.

I am glad the tramadol is helping to manage your pain, bteeter. Did your doctors explain MGUS to you?

MGUS is a common, age-related medical condition characterized by an accumulation of bone marrow plasma cells derived from a single abnormal clone. Patients may be diagnosed with MGUS if they fulfill the following four criteria:[1]

  1. A monoclonal paraprotein band lesser than 30 g/L (< 3g/dL);
  2. Plasma cells less than 10% on bone marrow examination;
  3. No evidence of bone lesions, anemia, hypercalcemia, or renal insufficiency related to the paraprotein, and
  4. No evidence of another B-cell proliferative disorder.

MGUS may potentially (not not necessarily) develop into multiple myeloma, which is why your doctors are keeping a close eye on you. MAYO are the MGUS specialists, so that is why your docs are recommending you make a visit. Keep us posted.

Well the bone marrow biopsy was normal (good news), it just stumped the doctors as you are correct in that it is an age related condition. It is a very low percentage like 2% or less according to the Mayo Clinic that it shows up under age 50. There for according to them I have to be extra vigilant.

dancermom said:

I am glad the tramadol is helping to manage your pain, bteeter. Did your doctors explain MGUS to you?

MGUS is a common, age-related medical condition characterized by an accumulation of bone marrow plasma cells derived from a single abnormal clone. Patients may be diagnosed with MGUS if they fulfill the following four criteria:[1]

  1. A monoclonal paraprotein band lesser than 30 g/L (< 3g/dL);
  2. Plasma cells less than 10% on bone marrow examination;
  3. No evidence of bone lesions, anemia, hypercalcemia, or renal insufficiency related to the paraprotein, and
  4. No evidence of another B-cell proliferative disorder.

MGUS may potentially (not not necessarily) develop into multiple myeloma, which is why your doctors are keeping a close eye on you. MAYO are the MGUS specialists, so that is why your docs are recommending you make a visit. Keep us posted.

I also have MGUS, which they consider the primary disease. CIDP is the secondary diagnosis. MGUS triggered CIDP. my hematologist told me dont think if you have one, you can't have the other. My neurologist told me that CIDP is ALWAYS a secondary diagnosis. Im waiting on bone marrow results now to ensure that I do not have one of the syndromes associated with MGUS. I am 58 yrs old. Im being seen at Moffitt, the cancer center here in Tampa by malignant hematologist. They are very familiar with MGUS. Please keep us posted

That I will, They finally sent a consult in to the Oncology department at the VA medical center here in Muskogee so they can keep track of my blood work and follow-ups.

Have a great holiday season.

I have MGUS. My last electrophoresis showed it disappearing, of course I'm still tested for it every six months. If you read deep into the CIDP literature MGUS is a common statistic for CIDP.

>> My neurologist told me that CIDP is ALWAYS a secondary diagnosis.

This made no sense to me, fitgirl. Can someone explain what this means?

http://www.pdn-info.co.uk/

I just had an echo done yesterday at the VA and today I get a phone call to schedule an appointment with my primary care Dr. next month. I usually don't see her but once a year and that happened in November.

As far as the MGUS is concerned to me it is like so many things, that don't make sense, I know it is there and I don't particularly want it there but, it is just another one of those things in my body that I have to wait and watch.