Reply To: Anyone diagnosed with polyclonal hypergammaglobulinemia?

Polyclonal gammopathy can reflect an underlying condition, typically liver disease, connective tissue disease, hematologic disorder, visceral leishmaniasis (usually from travel abroad), infection, or malignancy. Are your RBC and WBC counts normal? If not, please see the discussions here for some additional information: http://www.gbs-cidp.org/topic/anemia-due-to-cidp

The numbness, burning, and pain symptoms you describe are usually associated with CIDP, but could be due to a close cousin (MFS, MMN, etc.) or another related neuropathy. Pain seems to be fairly common with us GBS/CIDP sufferers. I’m lucky to not have had too much pain. Following is a summary of what other members have reported helping with the pain:

Some say 150 MG of Lyrica (Pregabalin) can do wonders for pain. This is similar to Gabapentin (Neurontin), but members believe they get better results with the Lyrica.

Another member reported that this spray has helped greatly: http://www.amazon.com/Salonpas-Pain-Relieving-Spray-Ounce/dp/B00759WR7I/ref=pd_sim_hpc_18

Fibromyalgia pain can sometimes be similar to CIDP pain, especially the burning pain, and a new medicine called Savella (Milnacipran) has proved successful in reducing that pain: http://www.mayoclinic.com/health/milnacipran/AN02019

A few members have looked into this device: http://www.gbs-cidp.org/topic/spinal-cord-stimulator

Alpha Lapoic Acid (1500 MG per day) may help relieve pain and numbness too, but the affect might not be evident for 4-6 weeks. ALA may also help treat some forms of CIDP. You can read about that here: http://clinicaltrials.gov/show/NCT00962429

I had routine incontinence and was cathetered until I was able to retrain my muscles after several months. Then I had to wear diapers for a year while I regained full control again.

Numbness may be the most difficult to get away from. I have arm, hand, and leg numbness for 6 years now. I think most of us tune-out the tingling after so long, but when I stopped to think about it while writing this, it was still there.

The Mayo Clinic in Rochester studied polyclonal gammopathy in the 90’s and you can see an overview about the study here: http://www.ncbi.nlm.nih.gov/pubmed/11357794
Another more recent independent study is here: http://www.ncbi.nlm.nih.gov/pubmed/19008139

It’s no fun waiting for a definitive diagnosis. I hope your doctors get to the bottom of it soon so you can get specific treatment.