I am 64 y/o Vietnam Vet. I diagnosed with C.ID.P. in November of 14'. However, I have been suffering since 1994. It first started with numbness in my toes and feet. Now I have severe neuropathy bi-lat legs up to mid thigh. I also have nerve damage and drop foot in my right foot. The Neurologists from the V.A. have talked about I.V.I.G.However, apparently I'm not a good candidate right now because a biopsy of a nerve removed from my ankle indicated ! am in some sort of remission.
One of the side effect of I.V.I.G. I am told is possible Renal Failure. I do not believe it is a treatment that should be attempted lightly. As a matter of fact I was told one treatment would be well in access of thirty thousand. I do not know what type of insurance would cover this. Since I have been advised that it is still somewhat experimental. I'm a Service Connected Vet so, the V.A. will pay all of mine.
I believe everyone should give careful consideration before beginning this very serious treatment.
I'm also a 64 yr old Veitnam vet. Not many of us in this age bracket, most are older. I spent time near Hue City / Phubai, Danang, and at MACV HQ in Saigon. I'm told Danang has over 300,000 times the level of Agent Orange in the soil to require soil remediation / decontamination under US guidelines.
My symptoms started very slowly in the left foot in the early 1980's back then and for many years after I was tested for Diabetes and got a shrug of the shoulders when I proved non diabetic. My symptoms have accelerated the last 4 years and in particular the last year.
I've been recommended IVIG as of about 6 weeks ago. I'm not connected to the VA in any way. I'm a permanent expat long story there. My insurance is socialized and actually very good, I've been told prior to checking in detail that IVIG is covered here, the Govt. subsidizes all medical costs with extremely low deductibles or pays completely for them. A doctor who is part of my treatment team spent a number of years working in the San Antonio VA and he suspects Agent Orange as the cause of my disease, but also added they won't cover it at VA, which I already knew.
However, I'm also dragging my feet on treatment due to risks, and wondering if my progression has been so slow until now should I try alternative methods of treatment and avoid the risk?
When i was prescribed my first series of IVIg.infusions I was petrified! I’m a retired doc so I have too much info at my fingertips ( with the web, so does everyone else). I read it all. The hepatic and renal parts stopped me cold. I drove them nuts with my unending questioning till I just put my trust in the docs that I was referred to ( and had researched thoroughly on the net). I had a moderate headache and backache the first day that went away with tylenol. The second day I had a mild headache. The third, nada! I’m 79 with a history of increased BP, Hepatitis C, and Epilepsy. Despite these predispositions, when the rate of infusion was kept below 150/hr, i have no problems whatso ever. As reported elsewhere on this site ( tag hypertensive crisis) I learned this the hard way. Prior to the crisis, I started at 70/hr but was at 240 before the 4-5 hr were up. TOO FAST!
Ig is thick; therefore, it has to be given slowly and the body has to be hydrated pre, during, and post infusion to allow for proper dilution.
ps don’t know where the $40,000 figure comes from but mine cost <$5000 per infusion in TN and is covered by Medicare and supplemental insurance in the US for a proven Dx of CIDP.
Pps you might want to talk to your doc again and reconsider the IVIg.
Yes welcome home my Brother! As a disabled vet @ 70 % I too have complete medical care and total coverage.
I am sorry your living out of the U.S.A. now, the Best Country in the entire World. Well, that's is my opinion anyway.In addition to the C.I.P.D. I also suffer with P.T.S.D. and depression. I don't know about the IVIG the jury is out for me currently. I am tittering right on the cliffs edge . I am experiencing a great deal of leg pain. If I complain about my symptoms to Neurologists at the V.A. they will probably admit me and start the dosage. I do worry about the side effects. I am at my V.A. everyday/volunteering as I live that close. I do train with moderate weights and do cardio for 50 minutes a day here at the wonderful V.A facility we have. However, I am constantly tired and have to sit often during the day and can not stay on my feet more than say 15 minutes @ a time. I push myself throughout the day, especially during my training time. Currently I am not on any meds for my C.I.D.P. but do take stuff for my insomnia and depression. I am not anxious to start I.V.I.G.but from what my Neurologist is telling me and the results of my biopsy from last year, and the severe nerve damage to my right foot, I.V.I.G., will be the treatment of choice they will use.
Thanks for your service and please come home Brother.
Cilthai mdolich said:
Let me first start by saying "Welcome Home" from one Vietnam vet to another.
I've been getting IVIG every three weeks since 2006. I was first diagnosed GBS (Guillain Barre Syndrome) back in 2003. I went to bed one night and woke up the next morning paralyzed from the waist down. Was rushed to the hospital and put in ICU. Within 48 hours I was paralyzed from the neck down, comatose and on a ventilator. I was given the loading dose of 10 rounds IVIG over a two month period. Then eight months of physical therapy before I was back up walking using a cane. I did good afterwards without IVIG for a little over two years. Then I had a bad relapse in Nov of 2005 and ended up back in a wheelchair. In Jan 2006 I was re-diagnosed CIDP, which is considered the chronic form/cousin of GBS.
Even though "Renal Failure" can be a side effect of IVIG, I have never had a problem with it. Also I've never read in any of the many groups for both GBS and CIDP that I belong too where anyone has mentioned having a problem of renal failure. So I feel it's probably a pretty rare side effect.
I'm glad to hear your neuro feels your in some sort of remission. You say that yours is service connected, how? At first they thought mine might have been due to agent orange, but ruled it out saying it didn't cause GBS/CIDP.
I also get all my medical through the VA at no cost to me. My neuro put me on Imuran in Feb of this year to try and space out my infusions from three weeks to six weeks. We found that I'm intolerant to Imuran. So she now has me on Cellcept and it seems to be working. I now go every six weeks my IVIG. Both Imuran & Cellcept are immunosuppressant's.
Yes Immunoglobulin is very expensive the VA calls it liquid gold, LOL. The VA claims mine cost $46,000 every time I get and infusion. Many here in the group have insurance that pays a big chunk of it, but they are still left with a huge co-pay.
Good Luck, "Stay Strong and keep a Positive Attitude"
What's up my Brother! Welcome home! I don't like to talk about the War that much, better things to talk about right? I am very proud of my Service and just like mdolich from this web site and yourself I am sure Honorably Discharged. I was in and out of Tan Son Nhut in Saigon and up north TDY in Da Nang. I was a combat medic, nuff said. As I already stated in my text to mdolich I am close to the edge at the V.A. for this treatment.Additionally, like yourself my A1C, test for diabetes was well within the normal range. I probably will proceed with the treatment. It depends on if the pain continues or not. Usually I am not that bad if I don't walk a lot. The nerve damage to my right foot seems to be worse. The V.A. did give me a nice brace for my drop foot, damage to my right foot, but I did not find it helpful. Because I try to stay very active, try to, that is. We'll see how things progress over the next few weeks. I am not familiar with other treatments such as the Immune Suppressant types, as the V.A. felt they were not warranted for me. I strongly suggest prayer. My personal devotion to My Lord and Savior Jesus Christ has helped me more than anything !
Oh, in addition to the Republic of Vietnam Agent Orange was used extensively in the Republic of Laos,the Kingdom of Thailand, the kingdom of Cambodia, and Okinawa in Japan. All five of these we had a U.S. presence.
Thank you for your service.
cilthai Yitzi said:
Hello,
I'm also a 64 yr old Veitnam vet. Not many of us in this age bracket, most are older. I spent time near Hue City / Phubai, Danang, and at MACV HQ in Saigon. I'm told Danang has over 300,000 times the level of Agent Orange in the soil to require soil remediation / decontamination under US guidelines.
My symptoms started very slowly in the left foot in the early 1980's back then and for many years after I was tested for Diabetes and got a shrug of the shoulders when I proved non diabetic. My symptoms have accelerated the last 4 years and in particular the last year.
I've been recommended IVIG as of about 6 weeks ago. I'm not connected to the VA in any way. I'm a permanent expat long story there. My insurance is socialized and actually very good, I've been told prior to checking in detail that IVIG is covered here, the Govt. subsidizes all medical costs with extremely low deductibles or pays completely for them. A doctor who is part of my treatment team spent a number of years working in the San Antonio VA and he suspects Agent Orange as the cause of my disease, but also added they won't cover it at VA, which I already knew.
However, I'm also dragging my feet on treatment due to risks, and wondering if my progression has been so slow until now should I try alternative methods of treatment and avoid the risk?
By now you should have the idea that IVIg is by far the safest possible treatment. If you look at the literature you will see that nasty side effects (adverse events) are quite rare. The more common side effects are generally more just plain inconvenient rather than dangerous though people with other (generally unrelated) complications can have problems. I have been on IVIg for over 3 years - nothing even half serious to note.
Cost is an issue but someone exaggerated the numbers you were given (unless there is a facility rip-off???). There is no doubt it is expensive but compared to other alternatives it is cost effective.
As for what "caused" your condition? Perhaps not agent orange but perhaps nobody can prove that one way or the other - check the literature (look in google scholar ). One thing most don't know about is the link to IBD (irritable bowel disease) which relates back to nasty stomach bugs you may have had in service (bad water, etc). Remember - there are some proven relationships but there is a great deal that remains unknown.
Hey are you a vet? You sure sound like one. You are incredibly knowledgeable! You are very accurate when you say mention about IBD. As a matter of fact, on occasion I did have to drink water that was available to us in the field and developed Hepatitis A, This was very common among Vietnam veterans and those who served in South East Asia/French Indochina, Vietnam, Laos, and Cambodia. That does not make much difference to me. I would have served my Country anyway.You are correct when you mention about C.I.P.D. not being a recognized claim, currently, by the V.A. However, neither was Diabetes and Diabetic Neuropathy until 1984, Many of the first generation Vietnam Vets lingered and died in V.A. hospitals without any comp and pen..
It remains to be seen what the A.M.A. and the National Institute for Neurological Disorders and Stroke will say about C.I.D.P. in the future. Right now it remains recognized as a rare autoimmune system disorder. History will tell.
Thank you, for your text.
God Bless you and God Bless the U.S.A.
Sincerely,
cilthai,
Michael C Stark said:
By now you should have the idea that IVIg is by far the safest possible treatment. If you look at the literature you will see that nasty side effects (adverse events) are quite rare. The more common side effects are generally more just plain inconvenient rather than dangerous though people with other (generally unrelated) complications can have problems. I have been on IVIg for over 3 years - nothing even half serious to note.
Cost is an issue but someone exaggerated the numbers you were given (unless there is a facility rip-off???). There is no doubt it is expensive but compared to other alternatives it is cost effective.
As for what "caused" your condition? Perhaps not agent orange but perhaps nobody can prove that one way or the other - check the literature (look in google scholar ). One thing most don't know about is the link to IBD (irritable bowel disease) which relates back to nasty stomach bugs you may have had in service (bad water, etc). Remember - there are some proven relationships but there is a great deal that remains unknown.
Yes I realize that now. I am so sorry for my misinterpretation.. I thought I was responding to yitzi. He is also a Vietnam vet and suffers from C.I.P.D. apparently. He states he is an expat and living outside the U.S. Please excuse my stupidity from an old Disabled Vet. I also suffer from C.R.S.(can't remember sh--) LOL.
My bad.
ur Brother cilthai
mdolich said:
Sorry I put the coma in the wrong place suppose to be $4,600. My mistake, I corrected it. This was what it was in 2007 if I remember right. I don't know what the price today is. It could be higher or lower. I'll have to ask my new neuro when I see her before my next infusion.
Cilthai, I don't live outside the USA. I live in the northwest part of the upper peninsula of Michigan. The Keweenaw Peninsula.
Hi, Yes I live overseas. I finished my Army tour with a year + in Germany, Honorable discharge after 2 yrs, 11 mo and 22 days. I volunteered for Army and for VietNam I considered myself a patriot. I was with a very specialized unit that worked closely with the NSA.
My family knows very little about my time in Nam and and only some travel tidbits from Europe. I don't discuss with any other Vets either, just not my way. In fact none of my friends are Vietnam vets. I'm being treated for PTSD. I also had IBD which was due to parasite from bad water, it continued after treatment until about 2 years ago when it finally stopped. I still have a very high CRP of 34 in the blood stream. According to my Nero, my EMGs reveal so much nerve damage in my legs that I should not even be able to walk with my crutches, thank God I can. I was very fortunate that my health permitted me to work until retirement at 55. After retirement, I left the US primarily for family reasons, to be close with my family who do not live in the US. I'm blessed with my wife of 34 years, healthy children and many healthy grandchildren.
I was only DX with CIDP a few months ago even though I've had it for decades. I'm still hung on the decision of IVIg, there is a part of me that thinks I got along so far with out it and that my disease progression has been slow and progressive, I've so much nerve damage already what good could it do, I don't think such damage of long standing is reversible. My pain is pretty well controlled by Lyrica and since Lyrica I can sleep at night which is a big plus.
It's like 05:00 right now. Leg pain woke me up about 04:00. I am very proud of you Brother. I don't know any of your life experiences since you left the military. From what you disclose they must have been, like mine very difficult. I in no way meant to judge you about your decision to live abroad. That's up to you. I only thought these are difficult times right now and maybe it would be better to be back home in the U.S. It is totally up to you. I also was assigned to a special unit in South East Asia. A better term for this would be French Indochina: Vietnam, Laos, and Cambodia. Sometimes it is better if we don't talk about any of this especially about any sensitive issues with our participation in the War.
It might be good if you seek out a group of vets you could talk with. The Veteran's Center(out patient) usual offer these. I do not know if you have one in your area.,I am glad you are getting treatment for your P.T.S.D as I am. I have not tried Lyrica. My primary neurologist at the V.A. just kind of brushes me off when I mention constant pain. He say things like "Well you know there are side effects to everything". "You don't want to be over medicated". Then he usually slaps my on the back and tells me how well I'm doing with my weight and cardio training. Apparently, they do not get the part of How Hard I have to push myself to do what I do. Like you I am sure. My legs, especially my right aches so bad I can hardly walk sometimes. I may ask him if I could try Lyirca. However, apparently they want to do another EMG. The test where they stick those huge needles in you with the electrical impulses, to check my upper body and right arm, nerve conductivity. This now is beginning to show weakness.I try not to complain too much at the V.A. Like my Mother always said, may she rest in peace, "if you start looking for problems, you might find some you don't want!". I know that my daily weight training and cardio helps to keep me strong. But also antecedent to everything else is Prayer and for me my Devotion to My Lord and Savior Jesus Christ.
In the future I think it would be better that we all stick to topic, "the mission" as we like to say in the military. That mission is to help one another cope with this disease. Constant reference to the War long, long, over I don't believe is helpful. As the wonderful Senator John McCain said "This is a time for healing now". I do appreciate this web site very much. I finds it has been a great source of helpful information and support.
God Bless everyone and God Bless the U.S.A.
Yitzi said
cilthai
Hi, Yes I live overseas. I finished my Army tour with a year + in Germany, Honorable discharge after 2 yrs, 11 mo and 22 days. I volunteered for Army and for VietNam I considered myself a patriot. I was with a very specialized unit that worked closely with the NSA.
My family knows very little about my time in Nam and and only some travel tidbits from Europe. I don't discuss with any other Vets either, just not my way. In fact none of my friends are Vietnam vets. I'm being treated for PTSD. I also had IBD which was due to parasite from bad water, it continued after treatment until about 2 years ago when it finally stopped. I still have a very high CRP of 34 in the blood stream. According to my Nero, my EMGs reveal so much nerve damage in my legs that I should not even be able to walk with my crutches, thank God I can. I was very fortunate that my health permitted me to work until retirement at 55. After retirement, I left the US primarily for family reasons, to be close with my family who do not live in the US. I'm blessed with my wife of 34 years, healthy children and many healthy grandchildren.
I was only DX with CIDP a few months ago even though I've had it for decades. I'm still hung on the decision of IVIg, there is a part of me that thinks I got along so far with out it and that my disease progression has been slow and progressive, I've so much nerve damage already what good could it do, I don't think such damage of long standing is reversible. My pain is pretty well controlled by Lyrica and since Lyrica I can sleep at night which is a big plus.
Lyrica has literally changed my life in terms of pain removal and the ability to sleep at night, It was like winding the clock back about 20 years or more. You have to try this stuff, I would recommend trying a lower dose at first as it does cause a bit of brain fog, and can make you less steady on your feet. I'm currently on 150mg 2X a day, it slows me down a bit and I'm going to ask If I can try a different dosage. I was started on 75 mg 2X a day and that actually took out much of the pain. Maybe 100 mg 2 X a day is right for me.
I actually don't mind the EMG / NCV so much, don't feel a thing in the legs or feet and there is no muscle twitch at all. In the arms and hands I do feel it and the muscles move. I've had 2 EMGs so far and according to my Neuro they show that I should not be able to walk, so far every day I prove that wrong. Even if I wobble a bit and need a cane to keep steady.
cilthai said:
Hey My Brother Yitzi:
It's like 05:00 right now. Leg pain woke me up about 04:00. I am very proud of you Brother. I don't know any of your life experiences since you left the military. From what you disclose they must have been, like mine very difficult. I in no way meant to judge you about your decision to live abroad. That's up to you. I only thought these are difficult times right now and maybe it would be better to be back home in the U.S. It is totally up to you. I also was assigned to a special unit in South East Asia. A better term for this would be French Indochina: Vietnam, Laos, and Cambodia. Sometimes it is better if we don't talk about any of this especially about any sensitive issues with our participation in the War.
It might be good if you seek out a group of vets you could talk with. The Veteran's Center(out patient) usual offer these. I do not know if you have one in your area.,I am glad you are getting treatment for your P.T.S.D as I am. I have not tried Lyrica. My primary neurologist at the V.A. just kind of brushes me off when I mention constant pain. He say things like "Well you know there are side effects to everything". "You don't want to be over medicated". Then he usually slaps my on the back and tells me how well I'm doing with my weight and cardio training. Apparently, they do not get the part of How Hard I have to push myself to do what I do. Like you I am sure. My legs, especially my right aches so bad I can hardly walk sometimes. I may ask him if I could try Lyirca. However, apparently they want to do another EMG. The test where they stick those huge needles in you with the electrical impulses, to check my upper body and right arm, nerve conductivity. This now is beginning to show weakness.I try not to complain too much at the V.A. Like my Mother always said, may she rest in peace, "if you start looking for problems, you might find some you don't want!". I know that my daily weight training and cardio helps to keep me strong. But also antecedent to everything else is Prayer and for me my Devotion to My Lord and Savior Jesus Christ.
In the future I think it would be better that we all stick to topic, "the mission" as we like to say in the military. That mission is to help one another cope with this disease. Constant reference to the War long, long, over I don't believe is helpful. As the wonderful Senator John McCain said "This is a time for healing now". I do appreciate this web site very much. I finds it has been a great source of helpful information and support.
God Bless everyone and God Bless the U.S.A.
Yitzi said
cilthai
Hi, Yes I live overseas. I finished my Army tour with a year + in Germany, Honorable discharge after 2 yrs, 11 mo and 22 days. I volunteered for Army and for VietNam I considered myself a patriot. I was with a very specialized unit that worked closely with the NSA.
My family knows very little about my time in Nam and and only some travel tidbits from Europe. I don't discuss with any other Vets either, just not my way. In fact none of my friends are Vietnam vets. I'm being treated for PTSD. I also had IBD which was due to parasite from bad water, it continued after treatment until about 2 years ago when it finally stopped. I still have a very high CRP of 34 in the blood stream. According to my Nero, my EMGs reveal so much nerve damage in my legs that I should not even be able to walk with my crutches, thank God I can. I was very fortunate that my health permitted me to work until retirement at 55. After retirement, I left the US primarily for family reasons, to be close with my family who do not live in the US. I'm blessed with my wife of 34 years, healthy children and many healthy grandchildren.
I was only DX with CIDP a few months ago even though I've had it for decades. I'm still hung on the decision of IVIg, there is a part of me that thinks I got along so far with out it and that my disease progression has been slow and progressive, I've so much nerve damage already what good could it do, I don't think such damage of long standing is reversible. My pain is pretty well controlled by Lyrica and since Lyrica I can sleep at night which is a big plus.
Great to hear from you! Yes, I did put in a written request with my Primary at the V.A. for a trial of Lyrica 100 mg. I believe that I will take one prior to sleep, to see if it will help.
Hello Cilthai - First off, many thanks for your service. All the Vets here have my deepest respect. I was diagnosed in August of last year by a sural nerve biopsy. There began a huge fight with my insurance company that ultimately I lost. They wouldn't pay for IVIG at that point, while it is CIDP they said it wasn't severe enough. My neuro went nuts on them because he says when it is "bad enough" I will have lost vital nerve function and it likely will not return. He was quoting $10,000.00 for one infusion at that point and that was not including the cost of the infusion clinic. Insurance was pushing for IV prednosone (sp -sorry) however I decided against it and my doctors supported that decision because of the side effects. There may come a point I have to give in to the lesser of two evils though.
I guess that I'm lucky in that it seems to be progressing slowly but I'm in a lot of pain. I see my neuro again in January. We'll see what the insurance company says then. So far aside from pain I have gotten a lot clumsier and lost the movement totally in a couple of toes - so I guess that isn't too bad.
You're absolutely right, this is a serious disease, as are the treatments....not to be taken lightly. You've come to the right place though....I've found the people here to be very supportive and very knowledgeable.
Hi Maggie: Sorry I did not get back to you sooner. I just checked this web site today. Sorry you are going through this. You seem too young judging by your picture. Neurological disorders are common among Vietnam Vets. We collectively have been hit kind of hard by the aftermath of Agent Orange. However, like most of us, I am very proud of my service and love my country very much. Why I'm making this point is that we as vets have a place we can go to address our issues, the V.A, It is a comradeship like no other, both with male and female vets. Others, nice people like yourself have to suffer with less support unfortunately I am glad that you find comfort in this web. Have you tried alternative medicine? I am also going to injury about acupuncture for relief of pain. This is offered at my V.A. I do not know if you are a Spiritual person, however,over the years I have also found Hatha Yoga and T.M. transcendental meditation to be helpful. For me, daily prayer and devotion to my Lord and Savior Jesus Christ has helped me more than anything.
Thank you very much for your support for everyone especially Vets. It is Greatly Appreciated !
Your Friend,
Cilthai Maggie said
Hello Cilthai - First off, many thanks for your service. All the Vets here have my deepest respect. I was diagnosed in August of last year by a sural nerve biopsy. There began a huge fight with my insurance company that ultimately I lost. They wouldn't pay for IVIG at that point, while it is CIDP they said it wasn't severe enough. My neuro went nuts on them because he says when it is "bad enough" I will have lost vital nerve function and it likely will not return. He was quoting $10,000.00 for one infusion at that point and that was not including the cost of the infusion clinic. Insurance was pushing for IV prednosone (sp -sorry) however I decided against it and my doctors supported that decision because of the side effects. There may come a point I have to give in to the lesser of two evils though.
I guess that I'm lucky in that it seems to be progressing slowly but I'm in a lot of pain. I see my neuro again in January. We'll see what the insurance company says then. So far aside from pain I have gotten a lot clumsier and lost the movement totally in a couple of toes - so I guess that isn't too bad.
You're absolutely right, this is a serious disease, as are the treatments....not to be taken lightly. You've come to the right place though....I've found the people here to be very supportive and very knowledgeable.
Have not heard back from you in a couple of days. You did receive my first response, I hope? How are you feeling? Come to think of it, just like you. I have lost some more feeling and movement in my right foot especially. Right now I am dealing with great deal of family issues and trying to help my youngest Daughter and her children. She's a single parent going to school to better herself. So, I've had to back burn my own issues, so to speak. However, I do find that daily exercise is vitally important. I talk with professionals daily at the V.A., especially Physical Therapists often. They stress the importance of some type of strenuous physical activity daily. I am not talking about just walking either. But some type of resistant training in addition to cardio. For example the various colored bands are ideal for this. One does not have to do 50 minutes a day as I try to do. But exercises for 5 minutes a day done several times a day, This will greatly help to preserve our muscularity we still have. However, as I always stress one's own personal belief in their Higher Power and daily prayer are also essential. Another thing you might try is reaching out to your local V.A. Everyone V.A. Center has a volunteer service department. THEY ALWAYS NEED HELP. Even if you can give a few hours a week this is always welcomed.
I have found that in service to others our own problems seems much greatly reduced and stress levels are much easier to handle.
I appreciate all that you have done for this country. If you go to the VA, does that mean that you cannot use Medicare? I'm on medicare with a supplemental insurance plan and get my IVig infusions paid in full. I was married to a veteran before he died. My experience with the neurologist at the military hospital for another painful neuro-muscular disorder, Dystonia was brushed aside. I had to use my insurance through work at that time to get to see a neurologist outside of the military. I am crushed that you have done so much for this country and are not getting the care that you need. When does medicare step in, or does it for you?