Dermatomyositis with peripheral nueropathy

[Sue7658]

My husband was diagnosed with dermatomyositis 4 years ago.  He did not respond to steroid or methotrexate therapy and began to show I nterstitial Lung Disease changes.   He was on IVIG therapy for 18 months and obtained remission.   He was off IVIG treatment for 10 mos and symptoms have return.   He had peripheral nueropathy symptom in lower extremities along with raynauds / carpel tunnel in both hands........He is back on IVIG and not responding to treatment.
The Rhuematologist says that peripheral nueropathy is not part of dermatomyositis.   Is it or not?   We were told at first sometimes it is associated with dermatomyositis.   I am afraid we have not found a doctor that can diagnose the problem.   He has lost 25 lbs without trying.   He weighed 185 and now is 160.  He is losing his hair.   He suddenly is having memory problems.  Does anyone have any ideas as to what is going on here?

[alam8819]

my father was diagnosed with dermatomyositis 5 years ago.  Since then his health both mentally and physically has gone done.  I am trying to do some research on his behalf regarding how he could have gotten this disease.  Does anyone have any knowledge regarding the exposure to radiation and its relationship to dermatomyositis?  

[sandrad66]

check dental work for Nickel and other metals...caps and fillings.... I have the same symptoms,..derm suspects dental work getting it all taken out and replaced with non metal.

[nazneen98mck]

what about hyperpigmentation in dermatomyositis?

[spastic]

Hello, I am so sorry that your husband is going through all this.  I don't have any answer about the peripheral neuropathy and dermatomyositis, I will suggest however to get another opinion.  As soon as possible, with him losing weight and his memory problems, give your primary Dr a call and see if you can get him in.  

Is it the same Dr that said it could be a part of it and now he is retracting it?  I will do some searching about the peripheral neuropathy and dermatomyositis and see if I can find out anything.

Your Friend,

Ada aka Spastic