sleeper692

This can't be true!. The VA has been telling me for years that GWI doesn't exist, there is nothing wrong with me andt that all my ailments are in my head. Dr. Haley must by a psycho mad doctor to even suggest such a thing in the light of conventional VA thinking. (Dr. Haley, if you ever make it up to Portland, the beer is on me!)

This is very true. To have the feeling that my brain is in slow mode, to have my speech slowed and forgetting words and peoples names is terribly frustrating. It just compounds my depression too. It really adds insult to injury to have my mental abilities deteriorating at the same time my body is breaking down. I sure hope Dr. Haley is right and the research brings some definitive answers soon.

Yesterday I was seen by two VA rheumatologists. After two exams and review of blood work recently done to rule out arthritis at a C&P exam, both doctors were stymied to come up with a diagnosis for the pain and swelling in my hands and feet. Once again, at the mention of GWI, I got an immediate "we don't even know if that exists" response and was sent on my not-so-merry way. In the past year they have ruled out everything from fibromyalgia to syphilis and can still find no quantitative lab or examination results that explain any of the symptoms that plague me on a daily basis. It is so very frustrating that, even after scrambling for a year trying everything they can think of to relieve my pain, they cannot or will not admit that I have GWI. I try to urge them in the right direction with the results of studies that show GWI is likely caused by multiple chemical exposures but they show little interest in the underlying causes and seem content to simply treat the symptoms by throwing bottle after bottle of medication at me. The medications are actually making me worse instead of better but they just keep upping the dose until I'm zombied out most of the time. My day basically consists of waking up in pain, taking meds, sleeping; repeat 4 times in 24 hours. I've filed for SSDI and TDIU and I am still waiting on results from both of those. My IU claim was just kicked back to the development phase from the decision phase *after* my C&P exams and I can't get any answers as to why. I swear, if they deny my IU claim, the first thing I'm doing is going down to the VA regional office and applying for a job. Let's see how that works out.

Hey Sgt Sandman, If you don't get a return call on Monday, I would send an email to Emily (evoigt@mnglab.com). She's a busy lady but she's pretty good about responding to emails. Pete

I just got to talk to a Neurologist / Biochemical Geneticist yesterday who actually understands GWI and was able to answer my questions with sincerity and a thorough knowledge of the illness. It was such a relief to finally talk to someone that didn't look at me like I was crazy. I can't even begin to imagine what you Vietnam vets are going through with AO. I imagine that a good deal of the doctors you deal with weren't even born before that war was over. To them, you're someone they mentioned in history class once upon a time.

I just got back yesterday from a trip to Atlanta to participate in a DOD sponsored study being done by Dr. John Shoffner at Medical Nurogenetics. They are still looking for another 20 or so study participants. Dr. Shoffner is particularly looking for GWV's that have joint and muscle pain along with the other typically associated symptoms. Dr. Schoffner is genuinely interested in finding a cause and treatment for GWI. He is using skin and blood samples, looking for genetic markers, mitochondrial damage and I'm sure a whole bunch of other advanced medical stuff that deals with DNA and cellular functions that is light years over my head. I got to spend about 30 minutes with the man and I was very impressed. He is thoroughly versed in GWI (and the ways of the VA) and has been the first doctor that I've ever spoken to that was willing and able to address the myriad of questions and concerns I had. He is already uncovered some distinct findings and is more than willing to share that information with my medical care team. He gave me a handful of cards and urged me to have all my doctors call him as he can give them information that would help them identify and treat some of the things that are going on with me. It was worth the entire trip just to talk to him! If you are interested in participating, all you have to do is call Emily Voigt (info below), a nurse at the clinic. She'll email (or mail) forms for you to send to the VA to release your medical records as well as a consent form to send back to them. Once they review your medical records and determine that you show the symptoms of GWI, Emily will contact you to set up a date for you to travel to Atlanta from wherever you are in the U.S. It took a couple of months from the time I applied to my actual visit. They pay for the flight, super nice taxi to/from the airport, hotel and a $100 Visa card (which they give you when you check into the hotel). Note: They will only put you up in a hotel if they can't fly you in and out in the same day. I flew in from the west coast and there was no way they could schedule me for one day so I got lucky. If I had the foresight, I would have asked for my flight home a couple of days later so I could have stayed and played tourist. The clinic staff is really great and made the entire experience quite pleasant. You'll get to interview with Dr. Shoffner for about 30 minutes then they take you into another room where they draw some blood and take two tiny pieces of skin from your arm to culture and study. In and out in less than two hours and it was all quite painless. Just in case you're wondering, it is cheaper for them to pay for your trip there and back than it would be for them to pay a physician to gather and ship the samples. Plus, they would freeze the skin samples for shipment and they want the samples "fresh." Besides, you wouldn't get to talk with Dr. Shoffner and that would be a huge missed opportunity to talk with a doctor that actually understands our illness. If you have the time and like to travel, I strongly urge you to contact Emily at the clinic and volunteer to participate. These are the good guys and they are truly trying to help us with what Dr. Shoffner says will be a study with major impact on the diagnosis and treatment of GWV's. Contact info: Emily Voigt, RN, BSN 678-225-0222 evoigt@mnglab.com Here is the an excerpt of the text from the letter they sent me about the study: RE: Study Recruitment Material Title: Mechanisms of Mitochondrial Dysfunction in Gulf War Syndrome Funding: DOD, GW080138 Principal Investigator: John Shoffner, M.D. Study Rationale: Gulf War syndrome (GWS) is associated with increased incidences of amyotrophic lateral sclerosis, pain syndromes, muscle complaints that include fatigue and myalgias, as well as other neurological symptoms. Approximately 100,000 individuals of the 700,000 veterans deployed in the 1990-1991 Gulf War have medical complaints consistent with GWS. Clinical manifestations are similar to those identified in Chronic Fatigue Syndrome (CFS). Abnormalities in the part of the cell known as mitochondria have been delineated in GWS and CFS. We propose that GWS is determined by a complex interaction of variables that impair mitochondrial function that include genetic susceptibility, pre-Gulf War exposures, Gulf War associated exposures, and aging. This study will be the first comprehensive investigation of mitochondrial function in GWS. Our objective is to establish the cause for symptoms in affected veterans, develop testing that can more easily identify GWS, and ultimately develop treatment protocols for GWS. The mitochondria have many functions that include changing the foods we eat into a usable form of energy known as ATP (adenosine triphosphate). All the cells of our body use this energy to run the biochemical reactions that allow our cells to function properly. Hence, the mitochondria act as tiny power plants inside of every cell. These power plants also utilize about 95% of the oxygen that we breathe. When the energy (ATP) is produced at normal levels, the cells function normally. When the energy (ATP) is reduced, the cells develop a variety of problems (analogous to a city during a brown out where energy dependent functions begin to fail). The central nervous system and muscle are often affected. These diseases can have their onset at any age and can even be triggered by exposure to certain chemicals and drug exposures. Multiple lines of evidence from the literature and from patients studied in our laboratory suggest that the mitochondria are not functioning properly in GWS and in CFS. Hence, detailed investigation of mitochondrial dysfunction in GWS is a priority. Over the last two decades, our group has been dedicated to working with patients with mitochondrial defects. Over the years, we described many inherited mutations and biochemical defects that impair mitochondrial function. Our proposal is unique in that we integrate a variety of specialized laboratory techniques that characterize mitochondrial function into a comprehensive investigation. Our proposal is designed to characterize mitochondrial function in 50 veterans with GWS using blood and skin cells. We will be investigating the skin and blood cells by characterizing precisely how mitochondria are working through detailed investigation of mitochondrial enzyme function, of mitochondria within living cells, of mitochondrial proteins, and of mitochondrial genes. Participation in the study will take approximately 1.5-2.0 hours of your time. The procedures performed during this visit are a clinical evaluation by Dr. Shoffner, drawing blood, and a small skin biopsy from the arm. Once again the consent form discusses the study and the procedures in detail. Dr. Shoffner will answer your questions about the study. If you are interested in participation, please call us at 678-225-0222

Just an update. I got my copy of my latest C&P exam where my myoclonus was evaluated. The examining doctor reported that myoclonus is indeed an "undiagnosed and unexplained mulit-symptom illness." It will be interesting to see how the raters handle this as there is no diagnostic rating code for myoclonus. I'm guessing they will use the code for tic's which only has a max of a 30% rating. That seems a bit low considering that my myoclonus affects my entire body and not just one muscle group. I'll post the rating results when I get them. My VARO has moved reasonably quickly on all my claims so I'm hoping to hear something relatively soon. (Edit: according to my eBenefits page, my claim has been kicked back to the development phase. Again. Probably waiting on notes from my appointment with a rheumatologist next week.)

Geez, that's some scary news. That probably explains why I couldn't walk straight through the metal scanner at the airport yesterday without bumping the sides of the scanner and setting off the alarm. Had to go at it three times before I could walk a straight line. It sure pissed off the TSA monkey so it was well worth it. Don't forget to print and/or email this article to your primary care doc. Trust me, the VA docs need all the education they can get when it comes to GWI. I know my doctor reads and researches the stuff I send her.

I had a visit with a neurologist to go over my migraines and "probably fibroymyalgia but I'm not sure" symptoms and treatments today. It was my first time visiting with this particular doctor. He was quite nice and helpful, willing to go the distance with me to try to find something that will help reduce, if not eliminate, the debilitating headaches 3 to 4 times a week. He was thorough in answering my questions and seemed to understand that I had a grip on my headaches and body pains after dealing with them for 20 years in increasing increments. Then I asked him if he was familiar with Gulf War Illness. Oh boy, I might as well have asked if he believed in voodoo. I got the eye roll, the "I can only treat symptoms" speech and then I was reasonably dismissed after some other minor discussion. Why is it that, today, even after the VA has admitted there is something wrong and researchers are finding more and more evidence of neural and mitochondrial damage, that VA doctors just don't want to hear the words "Gulf War Illness?" Of course, it didn't help that every blood test I've had in the last month (lets say 30 tubes of blood, easily) have all been negative for any indication that there is anything other than having a little high cholesterol wrong with me. I think that until someone comes up with a definitive cause and definitive treatment(s) for whatever is eating away at our bodies and minds, Gulf War Vets will be treated as a bag of symptoms instead of people with something believably wrong with us. I understand the VA's official take on GWI, but I don't understand why these doctors aren't more curious to look for underlying problems. The answer today was to double my meds and throw in a few new ones. Better living through chemicals, I suppose. Other GWV's seeing this same sort of disdain for your "imaginary" illness??? I know I can't be the only one. Pete Desert Storm B Troop, 2/17th Air Cavalry, 101st Abn Div.

My VARO did the same thing to me with one caveat: they rated me at 80% right off the bat (ptsd, major depressive disorder, migraines, IBS, with more in the works) then put the case back into development for IU. If the IU comes through, they will back date it to the original claim (so says my VSO) but the proof will be in the big brown envelope. It made sense to rate me on what they had while they gather information for the IU claim. Apparently this is not a standard policy or you would not be writing the apparent backward shift in your claim.. Maybe my VARO has an internal policy, maybe the person who rated my case is just being generous (and smart), or maybe I just got lucky. I would think that your VSO, if you have one (and you should!) could ask (push, shove) your VARO about this. They sent me back for two more C&P exams, one with a medical doc and one with a shrink. Once they got the reports back from the exams, my case moved back into Decision Phase pretty quickly. My VSO says she expects a decision as soon as 30 days. Hang in there. Hopefully things will happen for you soon!!

I found this a blurb on the VA web site about a "longitudinal" study for GWV's. In other words, they are doing a long term study of the health of GWV's at intervals over time and comparing the results. In the case of GWV's, the results of the study in 2011 is not encouraging. The study found that GWV's that were deployed in the combat zone have worsening health than those during the same era but were not deployed to the combat zone. GWV's are getting sicker instead of better over time and this government study proves it. When it comes to filing claims, the VA just put the smoking gun on the table for everyone to see. I've been telling my docs (and my VARO via claims) that I am getting worse, physically and mentally, at a most alarming rate. They think I'm just trying to scam increased ratings. If they ever bother to actually read my medical records, they'll know that my condition is deteriorating quickly and my entire health care team is scrambling trying to get me help and keep me alive. Maybe this study will help us out in the long run and get more funding for research so maybe someone can figure out what the hell is going on with us. Even better, maybe they can give us a normal life again. The Longitudinal Health Study of Gulf War Era Veterans

I had this damn twitching, which always felt like an electrical shock to me, for years. Along with everything else, its has worsened over the years. I mentioned it in a C&P exam last year but nothing was ever done about it. When my doc put me on buproprion, which is known to exacerbate myoclonus, it made the jerking so bad I looked like a damn marionette puppet flailing all over the place. I was getting full body jerking up to 20 minutes at a time and it left me exhausted and sore by the end of the day. Finally my doc sent me to a neurologist and it took him all of five minutes to figure out what was going on. The cloneazepam seems to control about 95% of the jerking but it leaves me groggy most of the day and things like getting my fingers to work properly to type are often difficult. I have a C&P exam next Monday for IU and I imagine they'll have the doc work up the myoclonus while she's at it. I already have the diagnosis, the C&P should confirm it, so it is really going to be up to the rater as to whether they will sc it under the GW presumptives. My VSO and I put together as strong of a case as we could citing CFR's for the GW presumptives and tons of medical info from the National Institute of Neurological Disorders (a US government agency). It may come down to what kind of day the rater is having. Now that it is becoming clear that I'm not the only GWV with this problem, if enough of us file claims and report the symptoms, etc, maybe it will catch someone's attention and we can get rated for it without a huge fight. I will, of course, post any news considering this particular claim as it happens.

Just to be clear, I've filed for this but yet to have it sc'd or denied. I would suggest the vet ask for a neurologist consult. I was not given a diagnosis until I saw a neurologist. My regular doc had no idea what was going on so she referred me on. I think asking for a diagnosis (and treatment) is not going to be out of line. Then once, and if, he gets the diagnosis, then he should either start a claim or submit a NOD depending on what he's already filed for. I imagine if he files for just for "twitching" they are going to send him to another C&P exam. They are also going to look for history so if it was noted at his original C&P, he should have enough to tie it to a presumptive neurological disorder. At least that's what I'm hoping for!

My claim for myoclonus as a "neurological disorder" as listed as one of the presumptive illnesses for GWV's is still in the oven. My VSO sent a huge packet of medical information about myoclonus with my claim to the RO. She is hoping that giving them as much literature about the disease and how it is a precursor symptom to more serious neurological disorders (or traumatic brain injury) will help make it clear to the rater. I'm sure it will be months before I get any word back but I'm hoping they will give me presumptive service connection for that along with sleeping disorders. I have two C&P exams coming up. One is for IU and one is a PTSD review (which is odd since they I just had a C&P for PTSD back in January and the RO wasted no time in giving me a SC rating of 70%). If and when I get any word on their decision, I'll certainly post it here. The cloneazepam that they give me, which they just doubled from 1mg to 2mg definitely helps control the twitching but it has the unpleasant side effect of leaving me groggy all day. I take the dose at bed time and when I wake up I'm pretty much a zombie for a couple of hours and its tough getting out of bed. It seems with us GWV's that, since they have no idea what the underlying causes are, we can only play give and take with our treatment. One drug fixes this thing but screws up that thing, etc. I can't even count how many times my doc has changed my meds over the last year trying to get symptoms under control.

I have filed for SSDI and TDIU and am running the hamster wheel on both of those. I've filed for increases on all my ratings and have a C&P exam coming at some unknown date. I've filed new claims for my neurological conditions. I bug the crap out of my VSO to be sure she is doing everything she can as fast as she can. I'm pushing on every front available. I know I don't have the worst of it and things financially will improve eventually. I'm still angry about it all. Let me put it to you this way: I knew I could be shot at when I went to war. If I was disabled from being shot I would at least know that I had accepted the risk up front. I didn't know my own government was going to supply me with the things that would screw up my life years later. That risk I didn't openly accept.

My pain is constant. My hands are swollen, aching and red. I get migratory pains in joints all over my body every moment that I am awake that feels like someone is jabbing an ice pick into the joint. I have migraine headaches that range from cluster headaches to full blown migraines that can keep me down for days at a time. My intestines are constantly cramping and the diarrhea is incessant. I have insane insomnia, I constantly feel tired and I am easily fatigued. When I do sleep, I wake up soaking wet from night sweats. My skin develops itchy and painful rashes and I often have intense itching over every inch of my body that drives me absolutely crazy for days at a time. The muscles all over my body twitch and jerk uncontrollably for no reason at all. Its not a stretch to understand why I was diagnosed with Major Depressive Disorder secondary to PTSD and all the other punishing ailments that I experience. For the past 20 years my symptoms have increased in intensity and frequency almost exponentially. The symptoms have gone from hardly noticeable to "will someone please give me morphine!" I've been examined by dermatologists, rheumatologists, I've had CT scans, blood tests and talked to shrinks and every one of them can't prove there is any reason I should be suffering from any of this. When I tell someone that I suffer from GWI, they cock their head and look at me funny like a puppy does when you squeeze a squeaky toy. I can tell that they think I'm full of crap by the way they roll their eyes and look away. I'm sick but I'm not stupid. At times I feel humiliated and others I'm just plain angry. Like right now. I'm angry that this is my reward for my total dedication during my military service. I'm pissed off that its taken the VA 20 years to give GWV's a set of presumptive illnesses for which we can file for compensation. I'm tired of fighting the VARO to get my illnesses service connected under those same presumptives. I find it incorrigible that the VA is keeping badly needed money from my current rating to pay back a separation pay I was given over 20 years ago. I can't work. I'm broke. My elderly mother, my only family left, has almost exhausted her savings keeping my head above water while I'm scratching for change for bus fair to get to VA appointments. I'm one "there isn't any more money to give you" message away from being homeless. I won't see a dime from the VA for another year. Thats a long time to go without anything to look forward to but empty cupboards. Repaying separation pay? Really? I can only imagine that the politicians that wrote that law haven't missed any meals lately. Every day is worse. Every day the medications have less effect. Every damn day the pain becomes more intense than I could imagine. I stay in my bedroom most of the time, not only to avoid bright lights and noise when I have headaches, but because I don't want people to see me this way. I don't want people to see my body jerk about for no apparent reason or to see me wincing in pain when a sudden, sharp joint pain comes along. I don't want them to see me doubling over in pain from intestinal cramps and I certainly don't want to take the chance that I may not be able to make it to a bathroom in time when the explosive diarrhea comes on, often without notice. I don't want them to see my swollen, gnarled hands or see me wince in pain when I pick up something as light as a cup of coffee. I don't want them to see someone who was once a strong, proud and healthy soldier turned into broken and ailing bag of pain and discomfort for no apparent reason. Its just downright embarrassing. I wish the VA had a form I could fill out simply to request my life back.

Speaking of Work Verification, I sent VA Form 21-4192 Request for Employment Information in Connection with Claim for Disability Benefits to my last two employers as part of my TDIU claim. One employer was my last full time employer back in 2008 when I was let go because of irratibility and the like (PTSD/Depression stuff), and the second was one who I worked for about 12 hours a week for about 8 months in 2009-10. Neither one of them has responded in any manner let alone returning the completed forms to me. My VSO says the VARO will mail the forms to them again and, once again, I expect them to be ignored. Besides simply delaying a decision (thanks for nothing, guys), will the lack of these forms hurt my TDIU claim?

My neurologist finally figured out that the anti-depressants they have me on is aggravating the myoclonus. I'm on cloneazapam, similar to valium, and it has calmed it down quite a bit. The only problem with the meds is that now I'm drowsy on top of the fatigue. I filed a claim as a neurological disorder under the GW presumptives. It will be interesting to see how the VARO treats this when they see it. I expect they will deny it so fast the letter will be on fire coming out of the printer. Allan, if you've got the muscle twitching going on, I suggest you try to get a referral to a neurologist for diagnosis. The scary thing about myoclonus is that it is often a symptom of a lot of other scary, more serious diseases from Parkinson's to ALS. It certainly scares the crap out of me waiting to see what comes next.

Well, just never mind. I finally got a hold of the records from the treatment program. I'll be damned if they didn't treat me for chronic fatigue and sleep disorder and did not put a single diagnosis in my chart for WHY I was being treated. Now that I have the psychiatrists name, I'm going to try to track him down and see if he can't give me a letter or something with a diagnosis. Geez, I really hate playing this game with the VA. It should be a whole lot more straightforward than it is.

I've been telling my VA docs, including the doc in my initial C&P exam, that my arms and legs jerk and twitch uncontrollably. It feels like I am receiving an electrical shock that can travel through my whole body. This has been going on for 20 years. None of the docs ever took note or asked any questions to explore my complaint. In the last 6 months or so, the frequency and severity of the twitching has increased to the point that it is affecting my daily life. Imagine drinking hot coffee when your arm suddenly jerks, spilling hot coffee everywhere! Its also embarrassing being around other people when my body is flailing about for no reason. I finally had a neurologist give me a diagnosis of myoclonus and has me on meds to hopefully control it. Yesterday I read an article about GWI that mentioned reports of GWV's reporting muscle twitching and jerking along with the usual symptoms. It was the first time I had read that association with GWI. Are there any other Gulf War vets experiencing this muscle twitching? I'm wondering if it would be possible to service connect the diagnosis of myoclonus under the current presumptives as a neurological condition. Anyone wiser than I have any educated opinions? Thanks!! Pete

I took my Gulf War Registry exam at the Puget Sound VA hospital (Seattle) sometime in 1999. The hospital recruited me for participation in a treatment research project that lasted six or seven months. I attended weekly group sessions with a psychiatrist that focused on experimental treatment for chronic fatigue and difficulty sleeping. I was also subject to a series of treadmill stress tests as part of the research. The record of my participation in this program is missing from my VA medical records. Since I was being treated for chronic fatigue and sleep disorders, those records are valuable to me as evidence for my current compensation claims/appeals. So I have three questions: 1) Does anyone have any idea where I can find the records this treatment if its not in my VA medical records? (My records were retrieved from the Seattle VA for a claim I submitted last year and there is no record of my diagnosis or treatment for fatigue or sleep disorder.) 2) Is there anyone out there that was also in this program that has used the treatment in the research program as evidence in a claim? If so, did the compensation reviewers accept it as viable evidence of diagnosis? 3) Is there anyone in the know that has the names or contact info for any of the researchers involved in the program? Thanks.

I found these two links on USA Today's web site. Nave Cpt Mark Lyles has been doing some research on what may be the smoking gun in the search for a cause for GWI: http://www.usatoday.com/news/military/2011-05-11-Iraq-Afghanistan-dust-soldiers-illnesses_n.htm http://www.usatoday....-elements_n.htm

I can't tell you how many times our chemical alarms went off and we were told to ignore it. I was at King Fahd Airport when SCUD missiles shot towards Dhaharan were intercepted by Patriot missiles almost directly over our heads. We were warned about the incoming missiles but no one thought to MOPP up after the overhead explosions. After we deployed forward, we had multiple alarms on a daily basis. The only time we were ever told to MOPP up was after receiving a warning of potential incoming SCUDs while we were deployed on the Saudi Arabia/Iraq border. While still at King Fahd we were lined up on a daily basis and had to take our PB pills in front of our company commander or platoon leader. Back in the US, we got a ton of shots before deploying. What we were injected with I can't tell you. I always thought it was ironic that, before we deployed, the NBC threat was a much talked about issue and in theater it was almost a joke. From the outset, there was a huge concern by command and the line troops that Saddam would unleash his chemical arsenal on coalition troops, particularly when he got backed into a corner. After years of learning about and training for Soviet NBC munitions, once the reality that such weapons might actually be used against us hit us pretty hard. Things like the anthrax vaccine and the PB pills were knee jerk reactions to an actual threat we hadn't faced since WWII. There was no time to the FDA to study the drugs and deem them safe. Nope, we were given meds that were considered experimental and no one new what the outcome would be. They said the risk was worth the benefit. On one hand, command was willing to take whatever steps necessary to protect troop assets but once we actually got in the field they turned a deaf ear and a closed eye to all the chemical alarms. When did the concern turn into ambivalence? Perhaps more importantly, why did that happen? 20 years later its clear we were exposed to chemical toxins and that stuff like the PB pills made it all worse instead of better. The sucky part is that GWI just keeps getting worse as time goes on.

B Troop, 2-17 Air Cavalry, 101st Airborne Division (Air Assualt) out of Ft. Campbell, KY. 152C, Aeroscout Pilot, SEP 90 - APR 91