[Sherri French]

Initial MGUS diagnosis, changed to POEMS diagnosis

by Sherri French on Fri Apr 20, 2018 10:09 pm

Hi All,

I’m new to this forum and disease process. I would like to share my story in the hope it will help those diagnosed with MGUS to continue seeking care and answers, especially if you are not feeling well.

I too was given the diagnosis of MGUS, but I was a shell of who I was. I could hardly walk, pain was uncontrollable!

I have POEMS syndrome, also known as osteosclerotic myeloma. My timeline and story of how I presented to physicians, misdiagnosed then subsequently treated:

History of leukocytosis (elevated white count) for 8 years.
Bell’s palsy 2008 same time elevated WBC started
Extreme fatigue
Numbness / tingling hands and feet
Vision disturbances
Stiff gait suddenly
Unbearable back and hip pain
Acne to face, scalp, and upper back, age 46?
Large bruises extremities.

These symptoms developed 2015 until I sought more care in October 2016.

2016 started seeking specialist

2017 March seeing neurologist, rheumatologist, oncologist

M-spike 0.3 g/dL (3 g/l) IgG kappa
Bone marrow 3%
Bence-Jones proteins in urine
Sclerotic focal lesion tailbone (skeletal survey and MRI)
Degenerative changes moderate to severe neck, low back, and hips
Gained water weight 2-3 pounds per day requiring water
Neuropathy worsened
Fat pad biopsy and rectal biopsy negative.

Diagnosed as MGUS with no concern for progression to active disease. Suffered for another year without pain relief.

2017 changed oncologist
First visit diagnosis made based off previous records (February 2017)
Confirmed with VEGF (level was elevated)
PET scan showing now 2 sclerotic lesions to spine.

Induction therapy and stem cell transplant immediately.

It’s important to let your doctor know all of your symptoms at all times. If there are sclerotic lesions, then your doctor will know to look for other criteria consistent with POEMS.

[Multibilly]

Re: Initial MGUS diagnosis, changed to POEMS diagnosis

by Multibilly on Sat Apr 21, 2018 10:19 am

Hi Sherri,

So sorry to hear about your diagnosis. But I am happy to hear that you finally found a specialist that was skilled and experienced enough to diagnose a rare case of POEMS. I hope that you find significant relief with your upcoming treatments. Wishing you good success.