DocC03

Mr. Mike you are correct.....somewhat.....at least in our area they will cover it if "THEY" decide it is an emergency. Is a skin infection with a fever of 104.3 not responding to antibiotics an emergency?? I would think so. The V.A. did not. Is chest pain an emergency???? I would think so. But the V.A. decided it was not. Pain ended up being muscular. With that being said they did cover one emergency room visit for an intractable migraine. So they do cover some of it. Is it worth risking financial problems going to the E.R??? Probably, because if it is a serious emergency and you might die then you need to go no matter what. Is it worth going to a private E.R. for something that might not be life threatening even though it "seems" like an emergency?? I'm not sure.

Do some research on the Spokane Wa V.A.....Emergency room turned into a walk in clinic only open about 10 hours a day. Have an emergency at night??? Go to the civilian hospital and pay the bill yourself. Not even kidding in the last year one of our docs were arrested for child porn and one was just found dead under a bridge. Many have quit and the Spokane V.A. will not hire anyone. I have had 3 primary care docs quit in the last 1.5 years. The Spokane director keeps doing news interviews saying that no vets have suffered from the closure of the ER and that wait times have not gotten longer. It's a bad deal up here.

Right or wrong, I do not talk to the people that answer the phone at Choice. I always get transferred to the nurses line at choice. The nurses seem to have a better handle on what's going on. Also one under utilized part of the V.A. is the social workers. There are social workers for the Caregiver program. Also for OIF/OEF vets and also I'm sure for other vets well. Get to know one of them at least on the phone. Email them with basic info. Make sure they know your name and be nice to them. Maybe visit them when you get time and let them know you appreciate them helping you out. Also visit them when you dont need anything. At the hospital for appt and have spare time then go say hello. It is the only way I can get appts is with their help or the nurse line. Also if it ever gets to point panic and things might not be very stable mentally I've been told that the Veteran Crisis line can make things happen as a last resort. I've never needed to go that far but I've heard that they would rather help you at the crisis line then to see a vet go snapshi* crazy and do something stupid.

Overview: Overall this program was pretty good. I left with more questions then I came there with. One note is that there is a lot of down time. I figured since I had to wait anyways I might as well wait in the waiting room. Pretty much every appt I got into early. And usually like an hour early. Bring reading stuff or a phone or something to play games on. Earlier on I talked about docs having agendas. Just keep that in mind. Have your ducks in a row. Know that if you are talking to a neurologist that you need to focus more on neurology stuff. Talking to a pain doc then focus on pain. Make the best use of the time you have with the doctors and do not be surprised if you come home with more diagnosis and more questions. Have a follow up appt with your primary care doctor scheduled for a few days after you get back. Go visit Release of Information early on in the week and get to know the girls in there. Let them know you are there for WRIISC and that you would like to get a copy of your MRI disc and all the doc notes that are in the system from the week. It takes a couple days to get the MRI disc so see them on tuesday or wed morning. Then follow up on on Thursday or Friday before you leave. Ask them to mail you anything that comes in the next week or so to your records. For some reason notes from these docs don't get your records very fast. Don't rely on myhealthevet. Don't rely on the records getting into the system. You will probably want them anyways to read on the way home so you can write down all your new questions. You will get a lot of downtime. I can't state this enough. If you have plenty of time download the UBER app. Its pretty cheap to take an Uber to town and go do something so you don't lose your mind. I was told there is a bus that takes you to Stanford where it is supposed to be really pretty with a few things to do. We did not take it. Ask the nurses where to meet the bus. Other then that I don't think there is much public transportation. Taxis are CRAZY expensive, we had 2 good UBER drivers. One was a kind of beat up car but really nice guy was putting himself through college. And the other one was 5 Series BMW. So the cars are all over the place. I will update this thread if I think of anything I missed and please feel free to ask anything that you can think of.

Review: At the end of the program you will sit down with the director of the program and review everything. This appointment took 3.5 hours and was well worth it. He reaffirmed to me that the neuropsychological testing that I did not agree with were not always a direct reflection on your cognitive abilities at the time. Other factors such as PTSD, sleep, stress, being uncomfortable in a small room with 2 people you don't know, all have an affect on the tests. This is where all the questions that might not have been answered in the other appointments should get answered. In my case I still have a few unanswered questions. Not because he could not answer them but because science has not figured out what is going on.

MRI: This is your typical MRI testing on your brain except with a 3 Tesla machine. Very detailed. Should put your mind at ease if you are wondering if there is something going. At least a person would think. I had an AVM in my brain. AVM's do not go away that I know of but for some reason it did not show up in this MRI. Maybe I was misdiagnosed in the past and had an Angiogram for no reason but I am thinking it is more likely that the doctor that read this recent MRI just missed it. I was told it was small so maybe he overlooked it. I would do this again.

Social Work: What can I say about social work. Nice lady in my case. She was surprised to learn that not all of the information in our records are in MyHealthEVet. She was shocked when I explained to her that our V.A. back home is so hard to get appts. I feel like social workers at the Palo Alto V.A. will be a good contact to have. She gave me her phone number and let me know that I could call her with any problems and she would help the best she could. One note is that she was pushing the whole can you pay bills questions and stuff. You know the questions that determine if you need someone to manage your money for you. The questions that if they check the box that you can't pay your bills then you are not allowed to own firearms. Just keep this in mind. Sometimes when talking to docs a person may tell them how they feel on their worse days. And why not....that's how you feel on your worse day so why not let them know. This is one of the situations to really think about. Maybe your wife/husband pays the bills all the time. But if push comes to shove, could you pay a bill if you had too???? Maybe not on a bad day but on a day that you are feeling halfway decent could you make a phone call and pay a bill??? Maybe you order something from Amazon once a year or you buy a beer....i mean soda once in a while. You can manage your money right?? Ok..Just keep that in mind. I would go to this appt again. It was a good appt. Good contact to have. Answer some questions that maybe you have not got covered yet.

Yoga/Aquatics: I am going to bundle these together. Yoga is offered a few times during the week. Aquatics is at your own leisure. You have to have a quick orientation at the pool and then you can use it at your own time during open hours. I did not make it to either of these. Yoga was always during other appts and I get skin infections and do not swim in public pools. Maybe I am overly cautious about public pools but after getting so many skin infections I just don't to risk it. These are leisure activities that might be worth doing because you do have a lot of downtime in the week. The appts are not tracked as far as I could tell and I am confident that yoga could be a benefit for some people. I am actually going to try yoga at a studio at home to see if the studies I have read about it being beneficial for fatigue and PTSD and grey matter in your brain are true.

Pain clinic: This is a normal pain clinic appt if you have ever been to one. In my case we reviewed my MRI of my neck and talked about the pressure on my spinal cord. We reviewed meds and treatments I have tried for my pain. They WILL NOT give you or prescribe medicine in this appt. They will however suggest strongly in your medical records that your primary care doctor try a certain medicine or treatment and then its up to you to work with your doc back home to make it happen. Keep in mind that this hospital is in the middle of the silicon valley and is very up to date on new treatments so there might be something that you and your doc back home have not heard of. I would go to this appt again without a problem. If nothing more to just review anything that docs have found so far in the week.

Chaplain: This appointment is not a bad idea to go. Regardless of your beliefs. You will meet with a chaplain that may not be your religion, if you have a religion. It only takes a few minutes. We did not really talk about a whole lot other then the very basic mental health questions. Just know that the notes from this meeting DO GO in your records. I would meet with them again if nothing more then to kill a few minutes and to have another contact at the V.A. in case of emergencies.

Environmental: This appointment is crucial. This is the doctor that you will see to review exposures. In the case of Palo Alto you will see a Colonel in the California Guard. She is awesome. But there is a language barrier kind of. Not so much with the words but she does not quite understand life outside a city. She is from Israel. She cares a lot about vets and will make it clear that she does. You will only spend about 1 hour with her. And she will ask you everything under the sun about exposures in military and civilian life. She wants a detailed timeline of all work you did before during and after the military. This is one appt that an agenda will be obvious. Seems to be a common theme that people that see her are diagnosed with Gulf War Illness. Not Chronic Fatigue or Fibromyalgia or unexplained medical illness but in my file it now says I have Gulf War Illness. She had already diagnosed me with GWI before seeing me. She had me come sit close to her and I was reading her screen as we talked and she already had it in my records. Not that this is a bad thing but just know going in that if your illness looks like GWI then you will probably be diagnosed with it. She did no exams or tests or anything. I would absolutely go to this appt again. It is crucial if not for anything more then confirmation of what you probably already know about yourself and to have it documented by a highly regarded doctor of the field. I have talked to a few people that have seen her and all of them have been diagnosed with GWI. I not saying that is always true but just keep this in mind.

NeuroPsychological and computer testing: This one really irritated me. This is where the good nights sleep really comes in. Just know that I had a bad experience with this appointment so I may be a bit biased. If you have never had this type of testing done then you are in for a treat. In my case I got a doctor who was very nice but that's where the good part stopped for me. This type of testing is commonly used by insurance companies to deny claims with civilians. The results can be interpreted any way the tester would like. These tests are things like draw pictures, remember numbers, words, pictures and such. The doctor will spend about 2 hours asking you about your military and personal history. They will come up with an IQ based on nothing more then your schooling and how many words you can read off of a list???? Figure that one out. You will be in the room for about 3.5 hours roughly. You will probably miss lunch because of it. You will be so mentally exhausted that you will just want to sleep. The testing is just crazy. They will tell you to remember words. You will probably think okay maybe there will be 5 words and then they just keep going till about 15 words. Then they ask for what you remember. Then 15 minutes later they will ask you again what you remembered. If you are anything like me you wont remember much. They will have you copy a complicated picture. My hand has tremors and my handwriting sucks bad. I drew the picture pretty good. You could clearly tell all the items were there. The sloppiness was nothing to do with mental stuff. Just my tremors caused it to be sloppy. I got almost no points because it was not neat???!?!?! You have to count dots. I was pretty confident that it was a test designed to see if you put in much effort. I assumed that because almost anybody in any condition except maybe alzheimers should be able to count dots pretty easy. I flew through it pretty fast. Did not stumble at all but yet I failed that test?!?!?!? About half way through the tests the demeanor of the doctor changed and you could tell he was frustrated. I am certain he decided at that point that the results did not matter. I truly put in all the effort I had. I did not pretend to not know something. Or intentionally try to sway the tests in any way. I did not know about these tests before hand so I did some research to see what I was getting into and the most common thing I read before the tests that there is no way to sway the tests at all so just be honest and do the best you can. And also that the tests can be interpreted any way they tester wants so they are not a true picture of what is going on. After everything was said and done the results showed that my scores were in line with Alzheimers. Except that I don't have Alzheimers. The doc decided that I put in "Suspect Effort" AKA faking memory issues. He did not write that I was faking it but might as well of the way it was implied. In all fairness he said in the report that severe PTSD might be causing issues. I did the best I could. I was incredibly tired from the lack of sleep, had not ate in a long time because we went past lunch, felt like crap, and had a horrible headache but even if it was a day that I felt pretty good I don't think I would of done much better. I do have some mild memory issues but nothing that should be too obvious on tests. Especially to this level. While I am admitting that I was not on my A game I don't think that caused the issues. I actually thought I did pretty good. I got a little frustrated because of the lack of instructions but I can say that without a doubt the bad results were from a lack of instructions and a preconceived idea of the doctor so he graded the tests a certain way. I consider these tests to be a waste of time. Maybe your experience will be different but if I had the chance to do these tests over I would not!!!!!! I WILL NEVER take one of these tests again unless they are done by someone outside the V.A. I don't see how a test result like mine could hurt a vet as far as rating if they are not claiming memory problems. But I don't appreciate being called a liar. To end on a positive note. I always thought that I had memory problems and these tests showed me that my problems were more because I was not hearing the information. Not from hearing problems but because my mind wanders so much that I can't pay attention for that long. So I did get something useful out of it.

Neurologyx2: There is a basic neurology appointment which is pretty much just a few questions. Nothing really gets accomplished in it. This one is maybe 1 hour. No tests are done. No physical exams. Nothing. The second neurology appt is more detailed and with a different person. This will include physical testing. You know the normal neurological exam. Push this, pull that, touch your tongue to your nose and such. The appt should start out with about 30 minutes of questions. Just getting to know you. Just know that every appt mostly you will tell your story about military service, personal life, which hand you use, how many bowl movements you have a day....okay a little exaggeration, but you get the idea. You will probably get tired of telling your story by the second day. Both of the neuro docs that do the physical exams are stanford professors. There names are very similar. Pay attention to which doc you are supposed to see. I got the wrong doc but we just ran with it. This is a very critical appointment and I would go to it no matter what. Be honest. Bring a list of what is wrong. And make sure that you ask all the questions. Don't worry about time. They will go over the scheduled time to answer everything. Most of the docs you will see this week do not normally see patients the same day as you except maybe pain clinic. There will only be maybe 2 patients in the program each week. Maybe 3. But that's about it.

So we have covered the lodging, food, and travel part. Now lets get into the appointments. Let me start by saying that the all of the doctors, nurses, and staff were very friendly. They are almost all Stanford professors that also work for the V.A. They seem to care about you. They have their own agenda and if you are perceptive it will become apparent what each persons agenda is pretty quick. Most of the doctors if not all are running study's so they will be focusing on their study's while you are visiting with them. I am not saying its a bad thing. Just know that if you are talking to a mental health person that it is in relation to a neuropsychological test you will be given. If you are talking to a nurse then more then likely they are thinking about trying to get you into one of the other study's they have going on. Medical doctor will be focusing on toxins and environmental stuff. Just keep it in mind, pay attention to their title, and you will figure out real quick what they are getting at. Most appointments are 1-3 hours long. And I dont mean 1-3 hours of waiting, you will literally spend that time with each doctor. The specialties you will most likely see are: Neurology, NeuroPsychological, Environmental, Chaplain, Pain clinic, Yoga, aquatics, Social Work, Computer testing, MRI. I think I covered all of them. Ill break each one down in future posts. We were told that ALL Appointments are optional even though they have been scheduled. I truly believe that you don't have to go to certain ones if you don't feel comfortable. I will break down the testing that would skip in future posts if I were to be able to do it all over again. The only testing that is done is MRI on the brain. It is done with a 3 Tesla machine so it is VERY detailed. NeuroPsych testng and if anything jumps out at them that a blood test might show then they might order a blood test but that is about it for testing.

After my Doctor submitting the request to WRIISC I called the nurse directly in order to make sure she knew how important it was. A side note is I had to take the direction for a referral to my doctor in order for him to understand. He had never heard of the WRIISC. Let me tell you from the start that these people that run this program are NOT LIKE anything you have probably experienced in the V.A. system if your V.A. is anything like mine. The program has 2 nurses. Both of them are soooo nice. You can truly tell that they enjoy there job. When I called the first time I was nice to the nurse and I asked her what I could do to secure a spot. She told me that since I was so nice to her that she would push to get me in the program. This is one of those times that being nice really helps. The Palo Alto V.A. is unlike any V.A. that I have ever been to. It is large. About 5000 employees. Constant construction going on. You can tell the the Palo Alto V.A. is somebody important's baby. There is so much money there. There are multiple large buildings. Once you are accepted to this program the WRIISC nurse will send all the info to travel to secure a plane ticket for you. If you are on the caregiver program then they will also secure a ticket for your caregiver. The best way to go is with a caregiver and I will get to why in a minute. The tickets for air travel will come about a week or so before you are suppose to be there. Its a little stressful waiting on them since you do not have your flight schedule it is hard to plan rides and everything else to the airport. Also you have the option of driving. Just know that if you fly, more then likely, you will leave your house on Sunday morning to fly there and you will fly home Friday evening/afternoon. Once you get your flight information you will need to call the "taxi" company that they have assigned to you, call them 24 hours to when they are supposed to pick you up and give them YOUR phone number and confirm the pick up. More then likely it will be ACE taxi. I use the word taxi loosely. They show in large cars with no markings, cars like a lincoln towncar and such. My wife said she felt like the CIA was coming to get us. The women that drive the cars are nice, very nice. You will be sleeping in the Defenders lodge. You can see a video online. Just google defenders lodge in palo alto. It is on the V.A. campus and probably about a 7-8 minute walk and slow to medium pace. There are also bus's and golf carts if you don't want to walk. If you come alone you will be sharing a room with a stranger. This is the reason I feel its important to come with your caregiver if you have the option. Your roomate will change every day probably. The defenders lodge would probably be a 4 star rated if it was a hotel. Its nice. There is a tv in each room. A nice bathroom. NO FRIDGE, and NO KITCHEN in the room. There is a kitchen and fridge downstairs in the common area. You can use the kitchen and fridge as you please. Just remember that if you struggle with PTSD you may have trouble with sleeping 8' away from a stranger. For the most part they are other veterans, which helps, but usually they have medical problems like ourselves so the combination of PTSD and medical problems might make sleeping difficult. The beds are absolutely horrible. In our case there was bandaids stuck on the sheets, the pillow were the rubber coated pillows, and the mattresses were really uncomfortable. This is important to know that sleeping will be very difficult for at least some people. I will explain later why you HAVE to figure out a way to get a good nights sleep. Noone cleans the rooms during the week that you are there so it will be a good idea to try to keep your room as clean as you can yourself. I was paranoid thinking that I was going to be under surveillance the whole time there and like always I was very aware of my surroundings. I can tell you that I never noticed anyone watching me. When you get there make sure you get the map from the front desk with all the building on it. It will help more then you know. Food was difficult for us. We were told that breakfast and dinner would be provided for the veteran but not the caregiver. The first couple days we could not figure out the food situation. For your reference it comes roughly 0700 and 1730 in the kitchen area in the defenders lodge. Lunch we would eat at the cafeteria which was actually really good. The first night that I ate at the defenders lodge I noticed the food was the wrong temp and I got very sick within 30 minutes of eating. I was up until almost minute in the bathroom. After that night we decided to get our food from the cafeteria for all our meals since my wife had to go there anyway to get her food since it was not provided for her. The cafeteria shuts mostly down at 1500hrs so you have to get dinner before that and take it to the lodge for later. There is one place in the cafeteria that stay open till 1600hrs with a very limited selection if you care to eat dinner early.

Moderators please move this to where it should be if its in the wrong place. I just got back from the War Related Illness and Injury Study Center (WRIISC) in Palo Alto Ca. I am planning on giving everyone a full review and outline of what happens there from a patient standpoint. While this outline is specific to Palo Alto I am fairly confident that the locations in New Jersey and DC are roughly the same. When I was setup to go down there I tried in vain to find much information on the program and I told myself I would provide a detailed account of how things go when I got done. This will probably be a pretty long account of the program so it might cover a few posts here. And if you have any question please feel free to ask I will do my best to answer them. Criteria for acceptance into the WRIISC Your VA Primary Care Provider (PCP), Patient Aligned Care Team (PACT), post-deployment health champion, or Environmental health provider may request an Inter facility consult for Veterans with possible deployment-related health conditions who have: complex health conditions and no known cause (medically unexplained symptoms-MUS) had many tests and/or treatment with appropriate follow-up and with little to no symptom improvement possible deployment-related environmental exposures problems or concerns Referral Process Referrals to the WRIISC program may be made by the Veteran’s VA Primary Care Provider (PCP), Patient Aligned Care Team (PACT), post-deployment health champion, or Environmental health provider and are done using the Inter Facility Consult (IFC) process in Computerized Patient Record System (CPRS). Click here for detailed instructions. VA Providers: Referrals are triaged to the appropriate regional WRIISC based on VISN location: CA WRIISC: VISNs 18, 19, 20, 21, 22 DC WRIISC: VISNs 5, 6, 7, 8, 9, 16, 17 NJ WRIISC: VISNs 1, 2, 3, 4, 10, 11, 12, 15, 23

Taken from the links you guys provided. (1) fatigue; (2) signs or symptoms involving skin; (3) headache; (4) muscle pain; (5) joint pain; (6) neurologic signs or symptoms; (7) neuropsychological signs or symptoms; (8) signs or symptoms involving the respiratory system (upper or lower); (9) sleep disturbances; (10) gastrointestinal signs or symptoms; (11) cardiovascular signs or symptoms; (12) abnormal weight loss; and (13) menstrual disorders. I am having a little trouble because to date all of my SC'D stuff has been specific such as Migraines or ankle injury. Reading this information it seems as though a would be asking the V.A. to rate me on each of my symptoms that are connected to Gulf war illness? Is this how I should read this info? Also is there anything that you have heard over the years that is maybe missed in the list above that could be connected to GWI?

Ms. Berta, You are awesome! Thank you so much for your help. Regardless of the financial aspect I would like this medical issue to be recognized as service connected now so if in the future it causes more issues I don't have to deal with it then. I have been reading a lot since I was told this is what is wrong and one thing I came across was an interview with Sec. MacDonald talking about Institute of Medicine advice to start calling it Gulf War Illness. This interview was the end of 2015 and the report was I believe 2014-2015. I know things move slow in the V.A. but MacDonald direction to the V.A. Staff was to start using the term "multi symptom illness due to Gulf War Illness" if I remember correctly. I guess where I'm going with this is should i be looking to file a claim under the guidelines that have been in place for a long time or should I be filing a claim based on the information that is in the works to change too? Or does the wording not really matter as long as each issue is claimed individually and not just gulf war illness as a whole? And one more question if I could. In my case one of my main problems if fatigue. I do not have a diagnosis of CFS so do I claim Fatigue or do I claim CFS? Thank you in advance for your time.

Pete, Thank you for the info. Helps a little reading the link you shared. I'm still about as clear as mud on this situation but I'm sure after reading and talking to some folks it will start to make sense. Can you share with us what a claim would like like if it were linked to GWI? Obviously not an entire claim but along the lines of what a person would claim under GWI? I my case it seems to be causing headaches, fatigue, muscle aches, swollen lymph nodes that are permanent, skin infections, joint pain, and tremors. Maybe not everything is tied to GWI but I'm not sure. So if I understand that I don't file a claim for GWI do I file a claim for each item listed and state caused by GWI or how does that work? Thank you in advance

Hello everyone, I was diagnosed recently with Gulf war illness specifically. This was done by an environmental specialist at the War Related Illness and Injury Study center. I have had problems finding many people with a claim for Gulf war illness specifically. There is a lot of talk about chronic undiagnosed illness and multi symptom illness but I am hoping to get some advice about how to proceed with a claim for Gulf War Illness? I actually thought that this term was done away with by the V.A. but this specialist was very adamant about that being what was wrong and using that wording. I hope I posted this in the right area and I will continue to read through previous questions that have been asked to see if I can figure anything out. If it's important I am 90% for PTSD, TBI, Migraines, ankle injury, and lots more but paid at 100% tdiu. None of my rating so far is for anything related to Gulf war illness.