Ok I admit it this post is going to date me. I was first told I had CIDP by a pain specialist about a year ago, it was confirmed by an EMG and NCT. I am now under the care of a Neurologist who has put me through countless blood tests to exclude various causes for my problem. About all that remains that can / will be done are a Lumbar Puncture and Sural Nerve Biopsy. During this process I've seen a Rheumatologist, Dermatologist, Endocrinologist, Infectious Disease Specialist etc. none of them have found any cause for my illness.
I've just had a follow up EMG / NCT because the Neurologist did not like the results of the first which he commented on by saying "If I believed this you could not have walked into my office even with your cane." The second test has not been seen as yet by him but the doctor who ran it and gave me the results says I have Sensory - Motor Axonal and Demyelinating Polyneuropathy with evidence of muscle atrophy in the feet and legs.
In all of my blood work which covered everything up to and including HIV, Syphilis, Lupus, POEMS, Liver disease, etc. etc all was negative / normal except CRP in a range between the teens and mid 30s, and slightly high Neruophils, and WBC.
I said all of this to ask does anyone out there have a history of exposure to Agent Orange? and do your labs and tests have similar results? I've been told I would probably qualify for Veterans Disability with these findings and my service in Vietnam. So I'm looking for information to that end as well.
Thanks so much for the information. I have initiated contact with the DAV to see if I can get assistance in making an application to the VA for benefits. I have been living outside the US for nearly 10 years now so the whole process will be different I imagine. I was fortunate to be able to work most of my life and have retired on Social Security benefits. While I had little bit set aside it will not last long if I have to keep dipping into it. Fortunately I have national healthcare and the cost is only about $60 a month for the extra coverage level on both of us. Co-pays are generally in the range of $4 to $10. But in a few cases I've had to pay for private visits to get in to high demand specialists in less than 3 or 4 months wait. On private pay visits the cost is $250 to $400 the wait is usually under a week. Normal doctor visits with my GP can often be had the same day and are totally free.
I do pay about $75 copay monthly for Lyrica since it's not fully covered as Gabapentin is. At this point I don't know what the cost of Plasmaresis is or if IVIG is even covered since Israel is a very small country I doubt enough raw material to make IVIG can be gotten here.
So far this illness has not gotten me down, I've had it slowly progressing for 30 plus years, it has accelerated the last 9 months and gotten my attention with pain and increasing disability. Until the last few months I had not sought treatment beyond reporting it to my family doctors who would test for diabetes and find none. Also I had never made a connection to my problems and Agent Orange before.
With regards to Agent Orange it was brought up as a suspect cause, and I understand that the VA has taken the official position that every GI with boots on the ground in Nam was exposed. I too was at DaNang for 3 months living on the air base and working on a little intelligence gathering and training Vietnamese to gather intel as well. The rest of my time in country was split between Phubai / Hue and Saigon at the Joint Chiefs of Staff HQ.
Nobody but another Nam Vet can understand what it was like and how difficult the environment in America was for Nam vets back in those days. I appreciate your service!