Hi, I am sorry that you are going through so much. I am also sorry that I do not have the answers that you need, but I wanted to respond to you because I know what it is like when you post something and you are just waiting for someone to respond. I suggest that you go to your doctor and discuss your concerns about what has been going on with you. I realize that you are afraid, but it is best if you open up about it. You are right about concerning your husband and family, I would feel that way too. However, wouldn't you want your family members to tell you if something were bothering them. That is what family is for right? Support. I am going through things too. I was suspected of having Lou Gerhig's Disease or ALS. So far I did not get my results back. I should know by tomorrow. Again, I am sorry that I could not help you with your problem, but good luck and if you need someone to type to feel free. Shelly
How are you?
The exact cause of POEMS syndrome is not yet known. It is very rare disease and is not believed to be a genetic disorder.
The diagnosis is mainly based on clinical examination and symptoms.
The symptoms that you are experiencing could be because of diabetes or Vitamin B deficiency also.
I would suggest you to take B complex supplements for a few days, if symptoms do not improve please consult a neurologist. Take care!
Thank You both for your replies.
Shellywill...I will keep you in my prayers while you await your diagnosis. Thank You for your kind words of support.
DrNoopurMD...I will run out at lunch today and buy/start taking Vitamin B Complex. Thank You! It is definitely worth a try. I did contact my endo yesterday but he said to follow up with my primary care MD. I'm going to schedule a physical today (it's been 2 1/2 years since my last one...although I see my endo regularly) and give the B complex a chance to work in the meantime. I know in my head that POEMS is very rare....my dad was treated at the Mayo Clinic in Florida and he was like documented case #13...but I can't help but worry. Nerve damage was his first symptom and biggest challenge though out his struggle with the disease. He even had a stem cell transplant with little success. It was a very drawn out and agonizing way to die, and I miss him every minute of every day. My first endo believed that the onset of my Graves Disease was probably due to the stress of my father's death. Thank You for your suggestion Dr. and I will keep you updated. Sincerely, Patty