I noticed on the old board for this site several people in the U.S. Navy stated having problems. I have recently started having problems and I am trying to determine if any other U.S. Navy Sailors are having similiar diffculties or symptoms currently or in the past.
A brief prospective of my symptoms history is as follows:
1990-1991 participated in Desert Shield/Desert Storm. Side note was only exposed to the air over there once briefly during Desert Shield.
1993 discharged honorably U.S. Navy
1995 Swollen lymph node on the left side of my jaw. V.A. ran numerous tests all negative. Diag. as cat scratch fever (even though test showed negative results)treated with anitbotics and the symptoms subsided until recently (slight lump on that side of my neck is still visible).

2001 Nov Minor problems I had sleeping turned into major sleep disturbances.
2002 Jan (approx) started having problems with an intense pain (I belive Neurological in order) in my legs and arms.
2002-2003 I have severe to mild pain anytime I attempt to perform any physcial activites. I have had several rashes on my chest. I have been getting tingling in different parts of my body. I have had small bumps which seem like acne but do not develop in to white heads and which do not pop. Late in 2002 I have begun getting severe headaches with the same kind of pain as in the rest of my body. This pain is interior of the skull (brain). I have also experienced some short term memory loss recently with small things that I normally remeber.
Once again I am trying to get some feedback to see if any other prior or current U.S. saliors are having or have had similar problems.

Well It is good to know that I am not the only one,My symtoms started back in 91 and they started with having the flu every two months i Then would have my hands and feet that would swell up and feel num at the same time they would hurt like there were thousands of needle pick at them.I also started getting rashes with these pimple that would pop and laeve an open sore.Since 99 ihave not been able to work due to my illness.I also have chronic headaches,joint pain ,irrtable bowel syndrom,carple tunnle on both wrist,gerd,sinus problems,fainting spells with dizzyiness,Tempeture that does not regulate,extreme fitiuge doing the slitest work,sleep not being able too or sleeping all the time.I was never over in the gulf I was stationed at home.I was with the carrier USS JOHN F KENNEDY.I did rercieve shots and one in particular that would make me have high grade fever and make me blow this green stuff from my nose and have joint pain for three days and then it would go away.I recieved this shot every six months and was never told what it was for and I never asked due to the fact that they knew what they were doing.Kinda of stupid of me ,but live and learn.Well I hope that this helped some.I would post another sight for you to look up but it is not allowed here so good luck and I will try to help if you need it.
Mark A
USN

I am just trying to get a feel for how many Navy personnel where affected by this. The problem I hate is my symptoms seem to be getting worse, and I have been unable to get any real cooperation from the V.A. Other than the old words that all my symtoms are not connected.The only thing that seems to work for the pain that they have given me is a strong muscle relaxer, which has the unfortunate side effect of knocking me out for 10-12 hours at a time.I am trying to see if enough Navy personnel are affected to try and organize in some way to draw (news and government)attention to the problem that not all GWS suffers were in the desert.

One other thing in common now that u mention it. After getting out of the Navy, I also seem vulnerable to the flu for the past few years (but colds I dont seem to have any reaction to)

Wes
What I have learned from the va is that they are not out to help you or connect this illness to the service.They would rather have you die off from the face of the earth then to connect this to the service.There are way to many of us who are dealing with this illness who need help,me being one of them.I have no proof that all my illness occured due to my time in the service.I have been of all my meds except for darvecet which I use for pain. My liver is also not that good as well.So meds could make my liver even worse.This illness progresses at a slow rate and can even hit us all at one time.It has taken well over ten years for my illness to get where it is now.I have no more options left I have no job ,no medical insurance and I can not recieve medicade due to the fact that the va can take care of my illness.It is catch twenty two and it stinks. http://www.healthboards.com/ubb/mad.gif
Mark A

I understand what you and all of us are going through, however keep in mind that only a small percentage of the population is aware of this. The main point is the V.A. would have a hell of a time calling us liers. For example say if 12,000 Navy Vets all went to the news (any news agency)on the same day with the same complaint (news agency love a good story and mutliple vets on the same day with the same illness being lied to is a very very juicy new story). It would kind of make it very hard for the V.A., DOD, or any other agency to say we dont exist. Another thing I have started doing is taking pictures of the rash and other symptoms of the illness that are visible they may not be admitable in court of law, but it will convince the public (who really decides by common opinion what is going to happen in this regards). We dont have to convince each other what is going on. We have to convince the majority of the people in the U.S. what is going and then let the landslide begin. But first we have to have some outsideway(outside of the V.A.) that is of getting a count (for our own information to use in the news and a group dedicated to help each and every one of us. When I say this what I mean is a group that gets results not some group that asks for money and does nothing.)
I don't know about your but I am still fairly young and don't want to live the rest of my life with this thing just becasue someone somewhere doesn't want us to exist or be acknowledged. The more this gets in the news the more people will come forward to acknowledge what they know and then life will become very hard for anyone trying to supress the truth of what is going on.
One thing I have been trying to do is prove in the public's mind there is a problem. We have to prove to the public it exists not the V.A. or DOD. Some independent scientist have already tried to do this by themselves and failed. Remember the old sayings "United we stand. Divided we fall" or if you will "Divide and conqueror" either one applies to this situation and what is going on.

[This message has been edited by wes0007 (edited 01-06-2003).]

I was a Marine for 12 years and actually served in the Gulf twice, both times aboard ship (or on an anchored barge). I was there in 1988 during the re-flagging operations for 6 months and then again aboard the USS Tripoli during Desert Shiel/Storm.

I think I started getting sick about 4 or 5 yaers ago. I have never experienced any hair loss (other than normal) or intestinal problems but I have had progressively worsening joint pain and problems. It seemed to start with my knees and has spread to my wrists and other joints. I have this strange popping in my joints...and I mean all of my joints. My knees, elbows, shoulders, hips, ankles and even fingers. The joint will get stiff and then when I go to move it will "pop."

My knees are especially bad and cause a lot of almost constant pain. My hands and wrists are very painful too. I have been "diagnosed" with osteoarthritis in my knees and carpal tunnel in my wrists but no one can explain the popping or other joint stuff.

I am beggining to get a little afraid. I feel like I am only about 65% of what I used to be physically and I am only 38 years old. I wonder (fearfully) what I am going to be like in 30 years. Will I even be able to walk??

Is joint pain and problem something that other people are experiencing?

tony-k

You are not the only one like this alot of us are like that.What stinks about this whole deal is that this illness progresses and gets worse in time.Do not be fearfull and just hang in there.
Mark A
USN

One other thing that I should note medically about my case is I have a rare blood disorder (gentic). I was dignosed with the disorder by the Navy in bootcamp (reason is that if I am given anit-Malaria shots or certain other drugs it can cause me to go into a coma). Now that I think about it I wonder if somekind of immunization I recieved might have caused my symptoms.
I was wondering if any of you were diagnosed with any kind of blood disorders or rare traits? It might piece together why we are being affected while other guys are healthy. My conditions is call G6PD (abbrv for Glucose 6 Phosphate defiency) but the symptoms from it are yellowing of the skin and other problems not neurological problems like I am experiencing now. I am finally getting into the neurolgy departement at the V.A. but my appt is to far away I am trying to get it moved up.

I was in the Marine Corp for 4 years, 88-92. When Saddam rolled into Kuwait my unit was staged and ready to go to Norway for a while, then gunny called for formation and inspection of our cold weather gear and proceeded to tell us to return the equipment to supply and check out some hot weather gear that we were going to Kuwait...Well we all kind of looked around at each other curiously and were trying to figure out where that was. Never the less, we made the switch and were inspected again and just a few days later we were on the USS Guam LPH-9 and we departed on the 19th of August for the Gulf. I remember sailing by Rota, Spain on the 5th of September as that was going to be mail call for us except the mail hadn't got there yet. Anyway we kept moving and spent the night waiting to fit thru the Suez Canal and got to experience that traverse in mid-day. Continuing on from there after regroup we whirled around to Oman and got lifted off the ship for some surf and sand and some fine sleeping weather under the stars for about 24 hours, some kind of a "mock assault" where pretty much all I can recall was that when we took a stroll on the beach the sand was nearly knee-deep! What a pain that was!!! Swiftly moving on from there and up into the Gulf where we got to pull grid squares (for god only knows how long) and departing ship (imagine...marines on the ground) on the 19th of November. We quickly kissed the earth and realized that we were in Al-Jubayl where we were able to setup and begin operating. We hung there until the "Air War" started and recalling correctly, just before that day was when we all got our anthrax injection, pretreatment nerve agent tablets, and self-injecting vial of liquid valuim to be used in conjuction with the atropine and 2pam-Chloride. Upon getting the anthrax we all signed a piece of paper admitting that we were all going to agree to be called crazy, malingering bums. It was pointed out to me by my A-Gunner that there on that document, we were really agreeing not to tell anybody about the injection we were about to get, and if we did we would be subject to a host of penalties. Oh my god, have you ever noticed how threat works in a war zone? Anyway as orders came down we were moved up to Al-Mishaab for a while and got to experience some pretty cool sh.. immediately receiving fire from the Iraqi's. They were launching FROG missiles at us and they pretty well made it clear that they didn't want us there and that went on for close to 3 weeks. During that time was when Sadaam decided that he wanted Ras Al-Khafji and a cluster-f... was born. Needless to say he really did own a part of Saudi Arabia for about a day. More orders came down and west we went...don't know how far as we were pretty much out there by ourselves. We know it as a place named Lonesome Dove. Our next move was to occupy Kuwait City upon commencement of the ground war and for us that wasn't necessary since resistance just sort of melted.

Anyway I at that time don't recall anyone getting ill or seeming ill although we certainly were exposed to EVERYTHING! I can recall wanting to be left alone so I could just sleep for days, something that could account for GWS. I was diagnosed with PTSD for the first time, not long after I got out of the Corp (1993) and had a few good years when in 1997 I began to experience knee-buckling pain in my right hip. I tried as best as possible to continue work in getting along with the pain and did for a few years when the pain became continuous in 2000 and in 2002 was finally diagnosed with Avascular Necrosis of the Hips. Which means that they are dying and will soon need to be replaced...which I have elected to not have done at such a young age as it is only troublesome continually on those two joints. I am entirely disabled and was awarded SSDI just last December at the age of 39. Something has invaded my body I feel since not one of my siblings are experiencing this nor have any of my predecessors.

You need team members? I don't have anything else to do...I am ready, willing and able to travel! Let me know...

God Bless and Godspeed...Semper Fi

I have been fortunate so far my legs still work as does most of the rest of my body. It is my hope that if we can find enough veterans (using web boards and other agencies as obviously the V.A. and the government won't be much help)we can use the tie in factor of Gulf War to make a big stir in the media and to educate the average American about what is going on.
The old saying "the squeaky wheel gets the grease" applies here. The more people that know about this thing being real and not some minor 5 min news report the better our chances of getting treated or finding a treatment.

In my case I have found two other members in this forum that align with me on my physical ailments. In understanding Avascular Necrosis it is possible to assume that this disease has been generated by several causes. Many of which are Auto-immune afflictions. Note on the issue of Squalene...the adjuvant used to pump up the capability of Anthrax, it is known to cause Arthralgia, Rheumatiod Arthritis and a few other things that are not for me immediately recollectable.

Strength in Numbers, and yes it is true that the squeaky wheel does get the grease...as a Navy Unit Commendation recipient (which is the unit equivalent of an individual Silver Star)I find it unbeleivable that so many of my commrades all have issues of such likeness and we are being given rediculous titles now by our subordinates? Truly amazing...Also, I still have a good friend in the Corp and he is now a Warrant Officer and he experiences the same joint pain and vulgar sounds as many of us.

I am glad I found this site just for that reason. It was hard trying to find any Saliors or Marnies that had similar symptoms as mine until this site. I also have been doing resarch and trying to gather what physical proof I can about my illness as it seems to be getting worse. (I tend to think like a scientist in that I want to exhaust all possible causes, information, and details before making any conclusions, but so far the evidence weighs heavily on it being desert storm related)

[This message has been edited by wes0007 (edited 01-17-2003).]

Boy does this all sound familiar!. i was on a carrier in the gulf right before desert storm, and then i worked as a corpsman/medical lab tech at the naval hospital and i was fully prepped for saudi deployment but stayed behind after a coin toss at the last minute.
i probably was pretty well vaccinated. i had to call my duty station whenever i left home for more than 2 hours at a time and check in so i don't think there where any more shots or pills to be had here in the U.S.
unfortunately i have no idea what shots or pills i was given. my job was to take blood samples and not give vaccines and at the time nobody really worried about vaccines other than pregnant women.
i just lumped my not feeling well until about 4 years ago. finally an active duty chief i was working with part time convinced me i should go to the VA for help.
they found i had hypothyroidism,hypertension,poor heart rate regulation, sleep apnea,bilateral chondromalcia patella, bulged discs in my back, bi- lateral sciatica, and even had me on heart failure pills for awhile but they decided i didn't have heart failure and they really never did figure that out.
my symptoms come and go and change really often.
my VA appointments are 6 to 8 months apart sometimes so each time i have different symptoms that are more of a priority when i see my va dr. theres only time to address my worst symptoms, so i end up going home with no answers to older problems.
i have pain pretty much 24/7 mostly knees and back but often i ache all over like a flu ache where my ribs all ache and even my skin aches.
sleep apnea can cause alot of health problems all by itself so the va is trying to cure me of that to no avail so far. cpap just makes me feel less rested, tried all kinds of masks and nasal steroids.
so far the best medicine has been codiene, and "filtered drinking water" bottled water can even run me down some so a have a good filter on our well water and that has helped alot.
maybe i'd be having problems anyhow but nobody in my family has had these problems. my folks are many times healthier than me and they don't eat right or excercise. they have to help me remember things to the point the roles are pretty much reversed to where i feel like the senior citizen.
if anyone wants to email me directly i'd be happy to swap notes to see if theres some common threads. i'm from a small rural town in the midwest so it could just be all those vaccines and regular enviromental toxins from shipboard living or just good old california smog i guess, but so many gwi symptoms fit my puzzle that i have to keep wondering and watching the lateset gulf vets health news
i kinda wonder about experimental hiv vaccines myself, seeing how we did so many hiv tests at sea.
a big ship at sea on a west pac would make for a good controlled experiment just like a floating petri dish with the same enviroment for everyone. same food air and water and most of all vaccines for everyone for 6 to 9 months.
ya never know sometimes until decades latter like project shad and others. time will tell i guess. we should all stay as active as possible and open minded and do what makes us feel best and eat what makes us able to function best and listen to our bodies best we can.
having somebody tell you what makes "you" feel best is really agravating!. and that "we're all getting old" comment is grounds for a punch in the nose haha..
when a handicapped 78 year landlord with a muscle desease, can out-work a healthy looking 44 year old theres something obviously wrong.
when the va sends you to thier shrink and you bounce out with a clean bill of health and compliments and your blood tests are negative or don't make sense but are not real bad, the va tries different pills and physical therapy until they give up.
then again we may not live that long for them to have time to give up too.
hang in there guys n gals. try and stay active when you can and eat what ever works best to get you active.
sitting around just gives you time to think about your symptoms and all the things not getting done. distraction therapy can help alot. keeping your brain busy might over-run some of those pain signals coming in. turn off the tv once in awhile and crank your stereo to whatever you listened to when you were young and wreckless and do some house cleaning. sometimes a lil audio stimulation can overide the pain and transient negative thoughts that hold you back without you realizing it.
i'm suprised more vets that did time on a ship aren't ill. on a carrier the water was always having jet fuel in it or ecoli. everyone is effected differently i guess. "genetic shuffling" is really random as to how the body reacts to a foriegn substance or condition.
hope this forum subject grows in numbers so we can maybe learn something from others experiences.

Originally posted by oldb4mytime:
Boy does this all sound familiar!. i was on a carrier in the gulf right before desert storm, and then i worked as a corpsman/medical lab tech at the naval hospital and i was fully prepped for saudi deployment but stayed behind after a coin toss at the last minute.
i probably was pretty well vaccinated. i had to call my duty station whenever i left home for more than 2 hours at a time and check in so i don't think there where any more shots or pills to be had here in the U.S.
unfortunately i have no idea what shots or pills i was given. my job was to take blood samples and not give vaccines and at the time nobody really worried about vaccines other than pregnant women.
i just lumped my not feeling well until about 4 years ago. finally an active duty chief i was working with part time convinced me i should go to the VA for help.
they found i had hypothyroidism,hypertension,poor heart rate regulation, sleep apnea,bilateral chondromalcia patella, bulged discs in my back, bi- lateral sciatica, and even had me on heart failure pills for awhile but they decided i didn't have heart failure and they really never did figure that out.
my symptoms come and go and change really often.
my VA appointments are 6 to 8 months apart sometimes so each time i have different symptoms that are more of a priority when i see my va dr. theres only time to address my worst symptoms, so i end up going home with no answers to older problems.
i have pain pretty much 24/7 mostly knees and back but often i ache all over like a flu ache where my ribs all ache and even my skin aches.
sleep apnea can cause alot of health problems all by itself so the va is trying to cure me of that to no avail so far. cpap just makes me feel less rested, tried all kinds of masks and nasal steroids.
so far the best medicine has been codiene, and "filtered drinking water" bottled water can even run me down some so a have a good filter on our well water and that has helped alot.
maybe i'd be having problems anyhow but nobody in my family has had these problems. my folks are many times healthier than me and they don't eat right or excercise. they have to help me remember things to the point the roles are pretty much reversed to where i feel like the senior citizen.
if anyone wants to email me directly i'd be happy to swap notes to see if theres some common threads. i'm from a small rural town in the midwest so it could just be all those vaccines and regular enviromental toxins from shipboard living or just good old california smog i guess, but so many gwi symptoms fit my puzzle that i have to keep wondering and watching the lateset gulf vets health news
i kinda wonder about experimental hiv vaccines myself, seeing how we did so many hiv tests at sea.
a big ship at sea on a west pac would make for a good controlled experiment just like a floating petri dish with the same enviroment for everyone. same food air and water and most of all vaccines for everyone for 6 to 9 months.
ya never know sometimes until decades latter like project shad and others. time will tell i guess. we should all stay as active as possible and open minded and do what makes us feel best and eat what makes us able to function best and listen to our bodies best we can.
having somebody tell you what makes "you" feel best is really agravating!. and that "we're all getting old" comment is grounds for a punch in the nose haha..
when a handicapped 78 year landlord with a muscle desease, can out-work a healthy looking 44 year old theres something obviously wrong.
when the va sends you to thier shrink and you bounce out with a clean bill of health and compliments and your blood tests are negative or don't make sense but are not real bad, the va tries different pills and physical therapy until they give up.
then again we may not live that long for them to have time to give up too.
hang in there guys n gals. try and stay active when you can and eat what ever works best to get you active.
sitting around just gives you time to think about your symptoms and all the things not getting done. distraction therapy can help alot. keeping your brain busy might over-run some of those pain signals coming in. turn off the tv once in awhile and crank your stereo to whatever you listened to when you were young and wreckless and do some house cleaning. sometimes a lil audio stimulation can overide the pain and transient negative thoughts that hold you back without you realizing it.
i'm suprised more vets that did time on a ship aren't ill. on a carrier the water was always having jet fuel in it or ecoli. everyone is effected differently i guess. "genetic shuffling" is really random as to how the body reacts to a foriegn substance or condition.
hope this forum subject grows in numbers so we can maybe learn something from others experiences.I have worked with jet fuel for 10 years while in the Airforce. I first got the dermititus when I was 19. When I got out they gave me a 0 percent. 8 years later I came back and they give me 10%. In 93 I was in the UAE we had a fuel spill that we had to clean up. Within a year after leaving I showed the first signs of apnea. In 2000 I finaly got to the point I was loosing muscle control at night and swimming in bed. I am tired all the time, bad rashes and painful spots in the muscles of my leggs, I have or had a number of the symptoms mentioned for the syndrom. Is the Va giving you compensation for the apnea? I have my registry appt. tomorrow. Later, tired and itchy.

hi there, hmmmm muscle control huh? i'm having trouble with just one leg. driving a stick shift i can put the clutch in no problem, but i have lost some control when it comes to smoothly releasing the clutch. my leg comes back up jerky. i noticed also that now i can't balance on that leg. i do/did stretches where i'd balance on one foot and pull the other foot up and forward by reaching back, but the last couple months, i just can't balance on that leg, so some muscle or muscles aren't getting the impluse to contract or relax i guess.
when i started getting worse 2 years ago i had tingling in my feet and hands and when i tried to shave my hand would go numb and the shaver would just about fall out of my hand after just a few passes.
i had to do a lil at a time.
and i'd be sitting and relaxing and suddenly get the urge to gag and dry cough. it would come on with no warning and only last a few minutes and pass as fast as it came.
most annoying longest lasting symptom that never goes away is a high pressure feeling when i bend over a lil it feels like i'm completely upside down pressure wise. it feels as though blood rushes to my head more than it should and doesn't return like it should. the same feeling you'd get if you were hanging up side down is what i feel the instant i lean over or bend down. i had an mri showing cerebelar herniation of 7.5mm but the va didn't think anything of that as being a problem.
yes i'd think jet fuel in drinking water would probably not "do a body good" on the aircraft carrier water lines passed through fuel tanks and waste water tanks and you could see a petroleum rainbow in a stainless steel water fountain as the water swirled around the drain or as it sat in a glass.
you'd think it was hopefully something else but it would even smell like fuel. on the worst days it even felt slipery. we all drank a ton of soda when the water got really bad. sometimes taking a shower would make your skin tingle and burn. so you'd end up showering in another departments shower.
could be you add aviation fuel and marine diesel in with all the vaccines and stress and jet exhaust fumes ect and a body from the midwest or rural area just starts shorting out.
i found drinking water run thru a medical grade filter really helps me out. i'm on codiene and morphine for pain pretty much 24/7 and that raises hell with the digestive system and liver so this ain't much fun.
gotta go, nice to hear from ya.


[This message has been edited by oldb4mytime (edited 02-19-2003).]

oh ooops no i'm not getting compensation for apnea. i probably should go for that. i'm trying to tough it out and not go whining for compensation for every lil thing, but i do have documentation that i had poor sleep back then.
i was so zapped during the day i would stop at red lights and then just drive on thru as if they were stop signs. 8 hours sleep and i'd be nodding off by 10am even back then while in the navy.
ya know it takes a certain amount of energy and focused attention to file for compensation i dunno if i have the fight left anymore some days.
let me know how your claim goes. seems like if you have black and white documentation in your health record the va will help out without much resistance. sometimes i read about guys way way worse than i and they have to get a lawyer so i might be just lucky. i'm 50% service conected for blood pressure and knees. knees may have been just from a motorcycle accident in 90 while active duty. hard to say if its from the wreck or not but i had great documentation of that. it took two tries for my knees and i think over a year maybe 2 years to get it. the high blood pressure was also very well documented and that i got right away without hassle. i think the quality of documentation and the time line of when it started is the key to a faster claim approval. my fellow corpsman were top notch back then. the main one was on the presidents staff after he left the carrier, so i had really good documentation on my side.



[This message has been edited by oldb4mytime (edited 02-19-2003).]

Originally posted by oldb4mytime:
oh ooops no i'm not getting compensation for apnea. i probably should go for that. i'm trying to tough it out and not go whining for compensation for every lil thing, but i do have documentation that i had poor sleep back then.
i was so zapped during the day i would stop at red lights and then just drive on thru as if they were stop signs. 8 hours sleep and i'd be nodding off by 10am even back then while in the navy.
ya know it takes a certain amount of energy and focused attention to file for compensation i dunno if i have the fight left anymore some days.
let me know how your claim goes. seems like if you have black and white documentation in your health record the va will help out without much resistance. sometimes i read about guys way way worse than i and they have to get a lawyer so i might be just lucky. i'm 50% service conected for blood pressure and knees. knees may have been just from a motorcycle accident in 90 while active duty. hard to say if its from the wreck or not but i had great documentation of that. it took two tries for my knees and i think over a year maybe 2 years to get it. the high blood pressure was also very well documented and that i got right away without hassle. i think the quality of documentation and the time line of when it started is the key to a faster claim approval. my fellow corpsman were top notch back then. the main one was on the presidents staff after he left the carrier, so i had really good documentation on my side.

[This message has been edited by oldb4mytime (edited 02-19-2003).]
Had my appt. today. It appears I have Fibromyalga, etc. We'll see how it goes from there.

Jhch6
How long did it take them to come up with the dx of fibromyalagia?It took them five years for them to say that I had Fibro.I had also put in a claim for Undignosable illness and all of a sudden I was DX with Fibro.On top of that they did not even check the tender points .He just looked at me and said you have fibro.So you can see how this has got to me.To this day I still do not believe that I have fibro nor will I ever believe I have fibro.Now I have been getting infections through out my body but my blood checks out normal.Every three to four weeks i have been taking anti biotics for some type of infection that does not want to go away.I just do not understand what is happening.
Mark A

I have been trying to get to see neurologist. Currently I have a appointment to see Pyschologist ( I scheduled the appt so as to be admitted to a chronic pain support group that runs at the VA I am attending.
Sort of a catch 22 having to see a Pyschologist to get into a chronic pain support group if you ask me)on Feb 27, but I may need to change that date as I have a friend who needs me in court possibly on that date. The bad thing is I am still getting the killer headaches, same type of pain in my body on inside my skull. I have had on occassion at night muscle spasms with my legs kicking or twiching but so far it has not turned into anything major. The best thing that works for me for when the pain is unbearable is a 10mg muscle relaxer,however, it has the unfortunate side effect of putting me to sleep for 10-12 hours at a time plus lately I have been developing an immunity to it. I have yet to put in for service connected the scientist or practical side of me keeps hoping for a diagnosis or cure, plus just yet I dont want to cry wolf and give the VA another case to disprove that this thing exists. On a positive side note some of the people at the VA do care you just have to keep wading throught the system until u find the new doctors who havent been "syncronized " with the rest of the government. If you havnt checked it out look at my post about government website on this forum (I posted with permission from moderator 1 to make sure it did not viloate this boards standards). I have found that site has lots of usefull information where the VA is putting it's research money into. As well as which VA centers are doing what kind of research.

Originally posted by mark a:
Jhch6
How long did it take them to come up with the dx of fibromyalagia?It took them five years for them to say that I had Fibro.I had also put in a claim for Undignosable illness and all of a sudden I was DX with Fibro.On top of that they did not even check the tender points .He just looked at me and said you have fibro.So you can see how this has got to me.To this day I still do not believe that I have fibro nor will I ever believe I have fibro.Now I have been getting infections through out my body but my blood checks out normal.Every three to four weeks i have been taking anti biotics for some type of infection that does not want to go away.I just do not understand what is happening.
Mark A I have been diagnosed with severe sleep apnea. I had the symptoms within a year of leaving the gulf area. I also had the symptoms of fibro at the same time. Fibro is jut a name that they give a series of symptoms they cant' explain away or give you a reason why you have them. So acutaly it is still an undiagnosed illness. Did you get comp. for your fibro? I was told that I had a neurological problems. Something was slowly attacking my system. Good luck.

I have been reading and researching GWS trying to see some of the different symptoms people are having. There was one that would almost mimic my symptoms, such as joint pain to the point of being bed ridden a day or so eatinf Lorcet 10 mg every 4 hrs. Often have headachs, constant fatigue and so on. I was a corpsman with a marine unit. I was aboard the USS Guam sometimes and on land, depending on what my unit was doing. I got out in 1995, but prior to that this arthritis started and the lack of energy set in. Since then I keep Getting slower and slower. I'm 36 married with three beautiful daughters ages 1 month, 19 month, and 9 y/o. I feel as if I'm cheating them because it takes me making myself go outside to play for a short time with them, but there are many days when I ache and lack energy to do anything much. I have not been screened or persude the GWS. I never reaLLY thought it had any bearing on me. After reading this message board I 'm starting to wander.

hi doc! the joint pain and fatigue are a real bummer. sometimes you wanna blame the weather but sometimes the weather can be awesome and you feel like you have the type of body ache you get with a bad flu.
just like when we were kids sick inside on a nice day and all the other kids are out playing and having a good time.
i keep thinking i'll pull out of it especially when i have a few good days in a row, but it always cycles back to the aches and pains and fatigue.
i tried different diets and herbal things and they all seem to help for a lil while and then its like my body adjusts to the changes and i'm right back where i started, and sometimes worse off.
i eat and do whatever keeps me the most productive wether it makes sense or not. whatever the problem is it doesn't seem to follow any textbook rules so i guess whatever works best is the way to go.
i always wonder if i'd be this way if i was never in the service, and with no family history of these aches n pains and fatigue i have to lean towards my time in the service a lil heavier.
living on a ship can be a pretty toxic place and you add all those vaccines and enviromental exposures in the mix and some peoples bodies must really get a serious whallop.
not everyone is effected so theres no real clear trend in who gets ill when and where. i think of it in an analogy like the body is balancing on a tetter totter pre-service your in good shape and your inviroment has been the same for 17 or more years and you go to the meps center and start getting vaccinated, then suddenly your in close quarters with people from all over the U.S. in bootcamp and then from whatever inviroment you came from your bused or flown to maybe a ship or another country and your exposed to things that may be normally thought of as safe, but totally foriegn to your body.
then you add in some stress you wouldn't encounter in your hometown inviroment and everyones genetic makeup adjusts differently to all these foriegn elements. genetic shuffling is what its referred to i guess, just like a deck of cards not everyones body will react the same as each person has a unique make-up and has had different life exposures since birth.
so the even balance we had pre-service was from being used to our lifestyles and enviroments everything was balanced out over those years.
and when we went into the service it was alot of changes relatively fast and new exposures to aviation fuel fumes,jet exhaust,contaminated water, food from the gulf sometimes and shipboard paints and primers, all kinds of toxic stews going on plus the changes your body makes from being stressed even a lil bit.
i was from a really small midwest town and before i knew it i was full of vaccines and on a jet headed for a crowded boot camp in a big city with no idea of what was instore from me and from there i went to another city for a c-school and bang i was on a jet headed for a carrier right of the coast of iran. and i was getting trained as a decontamination corpsman for a bds station and i'd be among the last to leave the ship if anything ever happened. and all the gq drills with the suits is sort of a mind bender when your from the sticks. honking at cows and driving past cornfields is pretty much a stress free inviroment haha!! so i think that tetter totter just got knocked off balance by all the new exposures for me.
you vets with du exposure and time right there at ground zero exposed to who knows what, really have reason to be ill. even moreso!.
but i think all it takes is just enough of something your body isn't sure what to do about is enough to mess you up. as a lab tech corpsman doing blood smears or cbc's with diffs i could easily spot which sailors worked in the weapons department just by a microscope slide. and supposedly that was from cleaning fluid they used but i dunno... i'd think there'd be some trend in weapons handlers then.. i dunno??? trends don't seem to ever show up like you'd expect.
being a healthcare provider we were exposed to those that became ill in the field too so who knows.. i was coughed on alot and rolled up alot of sleeves to draw blood, hard to say what lil exposures of what were enough to throw things out of balance.
every lil thing piles up on one side of the tetter totter. i think the same thing can happen to civilians that are suddenly put in a toxic enviroment thier not used to and hit with all those vaccines we got.
those vaccines may have been alright years and years ago but our enviroment has been changing in the mean time. more pollution and faster paced lifestyles. theres not many "leave it to beaver" type families anymore haha.. its rush rush rush and kids raise themselves alot anymore. people don't eat nice home cooked meals as much. fast food and preservatives can be a factor these days to to put into the tetter totter equation.
and all the genetically enhanced foods and animals getting fed hormones and genetically enhanced feed to make them bigger and to mature faster.
its no wonder being in the service doesn't tip the scale some if you think about how things have changed and how we came from a lifestyle we were mentally and physically adjusted to and we were plopped right into a toxic stew. genetics might play a big part in this gws type stuff. years ago we didn't have super crops and fast growing animal feed thats genetically beefed up no pun intended...
everyone reacts so differently theres just not enough clear illness trends by duty station locations. we all transfer and move around before we realize we're not healthy anymore to the point we don't always put 2 and 2 together.
and maybe alot of us will never find out whats making us ill too. keep an open mind and do research i guess. get your basics tested. routine blood tests, thyroid is a big one!. if you snore at night think about being tested for sleep apnea. not breathing enough in your sleep can rob your bodies healing and cell replentishment not to mention the sleepiness!
the va can be a slow process but when your not able to work the free care is a lifesaver.
sorry bout the long post, i get carried away i guess http://www.healthboards.com/ubb/redface.gif)
get checked out hm2! the va can be really slow so before you get any worse get checked out. the va likes to treat symptoms 1st and lastly find the source sometimes just because there isn't enough time to see everyone in each visit and to save money it seems they try pills 1st and that can leave you with ill effects until they get you dialed in. best to go now before you get too many symptoms for the va to handle in one visit. appointments more than 6 months apart can really set you back. by the time you get to see your va dr again you may have several new issues and they only have x amount of time to deal with you. its like an assembly line at the va. x amount of patients to deal with in x amount of time. fatigue and aches n sleepiness are not a priority so they deal with what they can in the alloted appointment time. i've waited up to 8 months to be seen again and it just becomes a mess. by the time i get seen agian my prior visit is almost of no value.
i kinda doubt there will be a smoking gun other than the obvious exposures to gas agents,biologicals and du
i think its just simple enviromental exposure to foriegn elements like vaccines and toxins combined with even slight stress making our bodies respond genetically and that random outcome results in some of getting ill and some of us not getting ill.
30 or 40 years from now we may find an answer. best to listen to your body and do what makes you feel the best. keep an open mind to try different diets and remedies but your body will tell you what works best. i don't think we're gonna find a textbook solution other than to check the basic blood chemistries and try and balance them out.
fooling the body using medications to get more normal tests isn't always the solution. good tests sometimes only make for a fix on paper and not in the way you really feel. hang in there! knowledge is power i guess and sometimes ignorance is bliss too haha hard to find a happy medium sometimes..


Originally posted by HM2_DOC:
I have been reading and researching GWS trying to see some of the different symptoms people are having. There was one that would almost mimic my symptoms, such as joint pain to the point of being bed ridden a day or so eatinf Lorcet 10 mg every 4 hrs. Often have headachs, constant fatigue and so on. I was a corpsman with a marine unit. I was aboard the USS Guam sometimes and on land, depending on what my unit was doing. I got out in 1995, but prior to that this arthritis started and the lack of energy set in. Since then I keep Getting slower and slower. I'm 36 married with three beautiful daughters ages 1 month, 19 month, and 9 y/o. I feel as if I'm cheating them because it takes me making myself go outside to play for a short time with them, but there are many days when I ache and lack energy to do anything much. I have not been screened or persude the GWS. I never reaLLY thought it had any bearing on me. After reading this message board I 'm starting to wander.

Some of the things you said triggered my memmory on some stuff. My life is pretty much an open book so here are some details that might make a difference.

One, I have G6PD a type of blood enzyme disorder. Everyone going in to the U.S. Navy is tested for this as Malaria shots can put you into a comma if you get one.

Two, I was exposed to paint and primer on my ship during one refit.

Three, I did not breathe the air over in the Middle East during Desert Storm.I was only exposed to the air in Israel once during Desert Shield.

Four, I have had during my time out of the Navy minor problems that may or may not have tied into what is going on now this included: vulnerability to flu but immunity to most colds, ear infections any time I swum underwater, I had an injury to my hand (workmans comp accident) where a small bone was broken and when it healed I lost the use of my ring and small finger to a large degree. The doctor intially diagnosed it as RSD or Complex pain regional syndrome. I did not have pain with the hand except when trying to strech the fingers to keep the tendions from locking into an un-normal postion. After a year of therapy I was put at maximum medical improvement for those fingers.
The reason I rule out RSD as my problem right now is that I am getting a reoccuring rash on my chest and nose. The research I have done shows your hair and nails might grow faster with RSD but the rash pretty much eliminates it as the cause.

I have current symptoms that include insomnia (non apnea relate allready checked on it my self), rash, pain througout the body , a deep seated pain which lasts a few second to a few mins in one location then moves to another location in my body almost like muscial chairs. I tend to get tingling in the region that a few months later develops the pain, the area currently tingling is the back of my neck for the past two months or so. Lately that pain has transferred to my brain litterally. I have recently begun having problems finding words in my voclabulary and concentrating while this is occuring. Another tie in is that any kind of physcial activity seem to elevate the pain for the next few days. Currently I feel like I am on house arrest I only leave home when I absolutely have to. The reason being I know that for a day of activity I will have to deal with pain for several days. The sad part is I am starting to go stir crazy, even with the internet to keep my mind off the pain. I miss having an active life and am begining to think I will have to live with this pain the rest of my life.

Last but not least my frustration with the V.A. is not high yet. I belive it is a matter of resources that is promting the V.A. to act the way they are. Ironic isnt it we can give $16 billion to bribe African U.N. countries to vote for another Gulf War, and then turn around and tell veterans for the last Gulf War there is no money for research or effective treatment. My current opinion of the current U.S. President and his adminstration is very low because of this (sadly to say I voted for him the last time).In my opinion the only real research about this condition came from funding from a outside sorce (Ross Perot)and has caused the V.A. and the current adminstration to have to withdrawl thier claim that this condition is in the minds of the veterans and not physcial in nature, which is what had been said up until now. Only Dr Hallys research(sorry about misspelling) has disproved this to large scale enough to put egg on the face of the V.A. and the Presidental Adminstration. The V.A. cant handle the influx of veterans it has now from Desert Storm lets add a few more hundred thousand more to the mix (from another Desert Storm) and continue to cut funding for the V.A.. To me that kind of logic makes as much sense as putting a bull in a china closet and hoping nothing get broken. Sorry to get off topic but it does tie in to our current plight and what will happen when more loyal citzens come home with a delbilitating illness from something we still no nothing about 12 years later.


[This message has been edited by wes0007 (edited 03-16-2003).]

Wes
I am in the same vote and have been very frutrated with the va and for what they stand.Dealing with day afater day jsut stinks and having the va not being able to do nothing about it or for them not to be able to explain to you and your famly just makes matters worse.I have not worked for three years now due to the pain and everything else that takes place.I have been denide social security three times and have truely given up on the system.I have only the va and can not get on any health insurance that will help me with my illness.I have been thrown at with an illness that does not exist anywhere which is fibromaylgia was not tested for tender points but was dx with this illness because the doctor has no explanination for what is happening.I have been vaccinated while I served I have done three med cruises and have seen action more then once while I served.I am not considered a gulf war vet due to the fact I was never over there but YET I am considered a Veteran because I was serving during the war.I am loosing it and I do not know what I should do.I need help badly but the va has placed me on the side lines and have just given me things to make my life comfortable.So we are all in the same vote and we still do not have any answers that can explain why or not even a cure to get us better.I think if I do not stop now I will loose it so take all.
Mark A
USS JFK
VAW-126

Mark,
The route I am taking with the V.A. involves seeing neruologist to get his or her opinion on what is causing the pain inside my head and body. Have you tried getting the V.A. to authorize you a neuroligist.
Something else that might help is getting legal aid in your fight with social security. Lawyers can you get the social securiyty disability for unknown illness, it is a fact lawyers know about laws that most common citizens dont and know how to protect their clients. What you should do is look for a lawyer in your area that specializes in Social security disability and V.A. disability. They are out there I have looked up several in the area where I live. I havent used them yet because I am still in the fact gathering stage of what is going on with my case. When I feel that no diagnosis or more progress is being made with my illness then I will have no choice but to hire one.
Another thing you should do (if you havent already done it) is get a copy or you military medical records.
Above all dont lose faith about getting a cure for what is wrong with you. People do care about what you are going through. You have rights as an American citizen sometimes to protect those rights you have to be willing to go to court.

any of you navy guys that are having problem you will have to fight to get the help you need keep on insisitng and appealing any claims! it took my husband 15 years to get his disability from the navy but he did get it. You see 40 years ago he was on the uss ricola and got asbestosis from the navy, he worked in the boiler room with asbestosis floating around. he had to fight hard to get it, persistance is the name of the game don't give up the ship! fight for your rights you served your time and developed problems make them pay.............. do not take no for an answer my husbands time is short asbestosis will take his life he has gottoen progressivly worse over the last year the breathing is getting bad ans he sleeps most of the time i am sure he is in the last year or so of his life . please make them pay for their mistakes,

[This message has been edited by delrae4753 (edited 03-19-2003).]

Originally posted by delrae4753:
any of you navy guys that are having problem you will have to fight to get the help you need keep on insisitng and appealing any claims! it took my husband 15 years to get his disability from the navy but he did get it. You see 40 years ago he was on the uss ricola and got asbestosis from the navy, he worked in the boiler room with asbestosis floating around. he had to fight hard to get it, persistance is the name of the game don't give up the ship! fight for your rights you served your time and developed problems make them pay.............. do not take no for an answer my husbands time is short asbestosis will take his life he has gottoen progressivly worse over the last year the breathing is getting bad ans he sleeps most of the time i am sure he is in the last year or so of his life . please make them pay for their mistakes,

[This message has been edited by delrae4753 (edited 03-19-2003).]

Now I am getting frustrated! I just got a letter from a Dr. who never saw me saying that there is no detectable medical problems associated with my service in the Persian Gulf. The PA that saw me and gave me the physical flat out told me that she had "No doubt that the symptoms that I have now are from my service while in the Gulf theatre". She gave me the DX of fibro. I have since seen by another PA at the VA clinic who also doesn't think I am trying to pull a fast one. I am now on muscle relaxers and will probably be referred. Has anyone else ever been told the same thing. THanks in advance, CONFUSED!

When I went for the Gulf War exam I was told the same thing. However, at this point I am not applying for disabilty ( I may have to at some point). What I have been asking from the V.A. for is a diagnosis and some kind of treatment to solve the problem, so that I can get back to my life (disabilty would pay me far less than what I am capable of earning on my own). Recently the V.A. sent me another letter saying that this problem MAY (not that it was) be related to Desert Storm service. Keep after them if you are like me and can't work then there has to be a either a diagnosis that proves that or a treatment that fixes the problem.
On the same hand try and approach this with a skeptic's addtuide we (the people with these problems) know that we need treatment, but the public and everyone else only know what they see on T.V. about this (How many of us go out and tell everyone we see about our problem in public? I have told several people about it and the only people that know I am telling the truth are my friends and family. Other people tend to disbelive it.To date I have only seen a handful of Vets volunteer thier stories to T.V.) The first way to overcome any argument in any subject is to come up with physcial proof or facts that suport the argument one way or another.
With that said, I believe that recently the V.A. has been switching its attiude from one of denial to treatment (meger as it is). Keep pressing the V.A. for treatment if it is fibro as they say it is then ask them what the cure is. Start doing research to find out about how to treat it (this involves internet searches and physcal library time, yes public librarys'). Be an informed patient so if they are selling you a fast one you will know it. I beleive if the truth was known there are more of us(Vets) out there with this than they would like to admit.

Originally posted by wes0007:
When I went for the Gulf War exam I was told the same thing. However, at this point I am not applying for disabilty ( I may have to at some point). What I have been asking from the V.A. for is a diagnosis and some kind of treatment to solve the problem, so that I can get back to my life (disabilty would pay me far less than what I am capable of earning on my own). Recently the V.A. sent me another letter saying that this problem MAY (not that it was) be related to Desert Storm service. Keep after them if you are like me and can't work then there has to be a either a diagnosis that proves that or a treatment that fixes the problem.
On the same hand try and approach this with a skeptic's addtuide we (the people with these problems) know that we need treatment, but the public and everyone else only know what they see on T.V. about this (How many of us go out and tell everyone we see about our problem in public? I have told several people about it and the only people that know I am telling the truth are my friends and family. Other people tend to disbelive it.To date I have only seen a handful of Vets volunteer thier stories to T.V.) The first way to overcome any argument in any subject is to come up with physcial proof or facts that suport the argument one way or another.
With that said, I believe that recently the V.A. has been switching its attiude from one of denial to treatment (meger as it is). Keep pressing the V.A. for treatment if it is fibro as they say it is then ask them what the cure is. Start doing research to find out about how to treat it (this involves internet searches and physcal library time, yes public librarys'). Be an informed patient so if they are selling you a fast one you will know it. I beleive if the truth was known there are more of us(Vets) out there with this than they would like to admit.

I see a PA at the local VA Hospital clinic who is trying to treat my symptoms of body aches and joint pains with the muscle relaxers. She is consulting with her bosses on the problems of the chronic fatigue and being irritible, etc. What I don't understand is how the person that gave me the gulf war exam had no doubt of the cause. I was a skeptic and told the PA that maybe it was just a coincidence of my symptoms. She ensured me that she beleived that my problem stemmed from my service in the Gulf. If she would of put this in her report how can some Dr. who never saw me change what she told me? Not that I can get a hold of a copy of the report anyway.

You are allowed to get copies of all reports any P.A. or DR. makes of you in the V.A.. I routinely get copies of the report about every 4 th visit or so. At the V.A. you attend find the public records office tell them you want copies of your patient reports from whatever date to present. If the doctor is anything like the one I had the only thing they put in those reports is what you deny or the symptoms you have, but it also lets you see which doctors are telling you the truth and which ones are saying one thing and writing down another. You need to stay current on your reports so that if they get "lost" somehow you have a copy for use later. It also takes some searching in the V.A. to find a doctor who legitimetly cares about their patients. The one I have now (my current primary care doctor) is very good in my opinion, although I had to go through several doctors to get to him. I only hope the neruologist I get refferred to is as good.

Howdy wes0007!
And all along I've been only believing that I have hypothyroidism and hypoglycemia. OK, I was in the Gulf, yet that was between 1980-1983. During the Iranian conflict. If any of you were in boot at NTC San Diego between 83-85, then you would have passed thru me. I was the PO3 that trained 82 new recruits for Galley duty each week. I know, I don't remember who I am in the morning either!
The part that I'm having trouble with is, the time that I was in the Gulf was when the U.S. was nicey-nice with Saddam. We were supplying him with what he needed to fight the Iranians. I have all of the symptoms, but don't know if I could ever blame a gas attack from Iran. I do feel it's possible from chems, fuels, guinne-pig meds, etc... For about a year I was a BTFN on the USS San Jose(AFS-7). When I first got there we were finishing refurbishment in the yards. That's where the asbestos had nowhere else but go straight to the lungs. After the yards and underway, we had to un-rep aviation and diesel fuel. It's also discusting to have to clean the Bilges! Then again, cleaning three smokestacks isn't much fun either.
I have no idea other than the meds and vaccines to blame for the symptoms I have.
My younger brother was one of those Rangers that got gassed in Dessert Storm. He passed away in 1997 from a brain tumor and there's no history of cancer in our family.
Oh, the VA, as far as I'm concerned, IT'S A JOKE! We have a full Navy Hosp. here on Guam and only one VA Dr. in the clinic for 10,000 vets! I've been on medicaid and see a Reservist Dr. that specializes in dive medicine. All he says is, "your tests are all normal". I don't really want to go back to the VA, they might try to give me more of what I've got. If we all went to a Medical Examiner's office to get evaluated, then the VA would have nothing to worry about. We're not making this stuff up! I just want to be cured, not get high! I have my own company to run now, or I did.

MS3 K.E Tyner USN

ETIII
You are not alone on this battle.I was in from 86 to 92.I was never in the gulf and have ben dealing with what everyone else has.I am surprised that it took you this long to post.In my case I also believe that it was the shots they gave me.The one shot they gave that Just stands out has no name but each time they gave me that shot I was sick for three to four days with jint pain ,fever and none stop mucus coming from my nose.I asked the doctor about this and he said that it was normal.They never did tell me the name of that shot and I recieved it every six months or before any deployment to the gulf.Even my supervisor could not believe how sick I would get,and yet I still did my job the best I could.I have been dealing with the va for five years with no answers have not worked for two years.So just so that you know you are not alone.If I could get on medicade I would be seeing and outside doctor instead ,rather then the va.But family services says that the va will take care of my medical probs .yea right! like heck they will.So here I am posting like a mad man trying to find answers to why.
Mark A
USN

Hello mark a!
Mich. huh? I'm actually from New Castle, Ind. Used to go up to Kellogg for training. I know, it's an Army base, yet I started out in the CB's as a Builder. Then I went active as a BTFN, then changed over as the Leading PO(MS3) of the Ward Room on the USS San Jose. 8yrs total. The best MOS was Builder/ cross-trained as heavy equipment ops. Now I live under the flight-line to Anderson AFB. I get to see 12- B52's and 12- B1-B's fly over each day. It's in all the news, so I'm not divulging any secrets. Watch out N.Korea! Those birds are awsome!
True I haven't posted here, but I've been trying the Thyroid and Chronic Fatigue sections the most. Not much luck there either. I've been a Remodeling Contractor since '98 and here over the past two years my health has been on the down turn. Now it's impossible to even get to my customers. With the fatigue and muscle/joint pain in my legs, I fell 9ft. thru a corrigated PVC roof. I was knocked out for awhile and by myself. Worst part, it was at a Doctor's house! He didn't even help with my medical bill. I did do some more work on the same roof after I recovered and I charged him extra. I'm not the lazy type, I'm "Type A" and this illness is driving me bananas! By the time I figure out what's ailing me, I feel that I will deserve a PHD. I haven't been stuck on Healthboards only for my info, I've surfed almost all the health-sites. Catch ya later Mark! etIII

P.S. (For anyone else that might be reading this, we don't need to qoute each other every time we talk here. It takes too long to scroll down to the bottom!)

This website has been great for letting me know that I am not alone in my symptoms. Something we (all vets affected) is to establish somekind of national desertstorm syndrome day. The object of such a rally would be to inform the public and let them undetstand what we are going through and to let the new media see the true numbers affected.
One other thing I am still trying to track down my mitlitary medical records. It seems that NPRC gave them to the V.A. in 95 or 96 when I had that swollen lymphnode I talked about, see above posts.Sort of strange that they would request my medical records for "cat scratch fever" dont you think. I plan to ask for a copy of them from the V.A. on my next visit any takers on that the medical records got "lost" somewhere.

My husband was in desert Shield the same time you were there. He was in the Sea Bee's. He has been dig. with having fibermialgia. Don't think I spelled it right. He is going to the VA in Lexington KY. He started having stiff joints when he got out of the Sea Bee's and it has gotten worse as the years have gone on. He hurts all over his body. He has lost the strength in his left side. His body burns and hurts all the time. He can't sleep. He has bowl problems. I believe it comes from the shots he received before he went over seas. The military is treating he with pain killers but won't accept respon. for what is going on with him. He was also in VietNam. The condition is getting worse and worse. He is unable to work. He suffers from Depression as well.

My husband was in desert Shield the same time you were there. He was in the Sea Bee's. He has been dig. with having fibermialgia. Don't think I spelled it right. He is going to the VA in Lexington KY. He started having stiff joints when he got out of the Sea Bee's and it has gotten worse as the years have gone on. He hurts all over his body. He has lost the strength in his left side. His body burns and hurts all the time. He can't sleep. He has bowl problems. I believe it comes from the shots he received before he went over seas. The military is treating he with pain killers but won't accept respon. for what is going on with him. He was also in VietNam. The condition is getting worse and worse. He is unable to work. He suffers from Depression as well.

I am having several of the symptoms but have never checked it out with the VA. I was stationed on the USS Nassau.

Just another question, is anyone having problems being in sunlight?

At this time I am not having trouble being out in sunlight.

Thanks Wes0007, I am jsms93's wife. He has a sensitivity to sunlight. It gives him bad headaches and makes him sick if he gets too hot when he is outside, more than it use too. He has all of the symptoms that are discribed by others. A doctor once told him that he thaught that he had GWS but finally decided that he had irritable bowel and anxiety disorder. I think that he would pursue this with the VA if he thought that it would do any good. I just pray that the guys over there now do not come back with the same stuff. I know that my husband has suffered and I hate it. I hate it for anyone who has risked their lives for the lives of others and suffers with GWS with no help from the government.

You asked on a differnt topic when (age) that symptoms started to appear. Well, My husband was in the Navy, station on a ship he was also in desert storm. He did not start to get symptoms until early 2001. Nothing severe, he thought is was because he was turning 30. He kept saying he was getting old. He was very much in sports, he played football, softball, tennis, basketball and golf. He drank very seldom and never smoked. All of a sudden he could not make it through a game with out having back pain. So he started going to the chiropracter. shorthly after he could not even have a drink without getting sick. Again, he was blaming it on age. This went on for several months. Like I said earlier nothing major. Then in Sept 2001 he started having an upset stomach and had a loss of appetite. Then one day he woke up in severe pain. He went to the Dr that day. 1st treatment was for Acid Reflux.. He went back 2 weeks later (Oct 2001) and told his Dr that the pain was worse. He sent him for an ultrasound looking for and Ulcer. What they found was not an ulcer but Cancer all over his liver. It was a very unsual type of cancer for someone with his health and age. All of his Dr's were shocked. As a matter of fact 3 Dr's told him they could not treat him because they did not know what to do. He was then sent to Moffitt Cancer Center where they ran several test. They were never able to find the primary tumor.
When we found out he had cancer it was already in its last stage. It had taken his Liver, Spine, lungs, pancreas. He died 8 months later.
Even if they would have found it in an early stage the type of cancer (cell type) was terminal.. there is no cure.
The cancer on the spine was the reason he could not finish a game of sports with out back pain. The cancer on the liver was the reason he could not go out the the guys and have a beer anymore.
I still talk to his Primary care Dr. to this day. He truly feels that my husbands death is due to the gulf war.
Make sure you pay attention to every thing.. even things that might not seem related. It looks like you are doing very well at documenting. My goal is to try and find out how many people have been diagnosised with cancer involving the liver.

I have now been dx'd with chronic fatigue syndrom, fibromyalgia, sleep apnea, irritble bowl syndrom. Could somebody explain what the presumption of illness from the Gulf War means. I am a Gulf Vet. and I have opened a claim with the VA. I was also told to file by my health care provider at the VA. Thanks in advance for any help anyone may have to give.

In reply about the liver issue, I have read about many Gulfwar veterans having had the same problem. I did have problems with my last physcal in the stomach area, it was painful when the doctor pressed in certain areas. My primary care doctor scheduled me a ultrasound for this month of the stomach to make sure nothing is wrong. I am currently overweight and most of the weight is centered around my stomach.

About the presumtion of illness. There is a list of Illnesses that are presumed to be Gulf War related at this time which entitles you to compensation. The list of illness is contained in one of the documents at a government website (can't remeber which one but it is due to I have done a lot of reading on this subject). The catch as far as I could tell is that there has to be no other possible cause for those illness and that you had to have been in the military during the Gulf War. Try looking up the government website I was allowed to post here. It is down further on the board. I know that one of the links there leads to that info somehow just cant remember which one.

Going for MRI today.

Hope your MRI went ok?

wes007,

i just started my claim for GWI after checking out different forums but your topic is interesting to me. i was a marine helicoper mechanic on board the USS Guam/LPH-9 during the '91 gulf war. i am also G6PD deficient. before i got out in '94, i had 2 swollen lymph nodes on my left leg dia. cat scratch fever. right now i'm 0 percent for knee conditon, 0 for joint pain and 0 for skin conditon. i currently have server shaking/tremors to the left side of my body (leg arm and hand) i can type faster with just my right hand than with both. my neologist has dia. me with essential tremor so i think my Gulf war illness claim will probably get denied. will see what happens.

Update MRI shows nothing. Had a ultrasound done of my stomach area to make sure I am all right there. I am now waiting on results. I am also, currently attending chronic pain support group and I am the youngest person there. Which makes me even feel worse about my situation. In regards to the swollen lymph nodes above I think that blood defiencies play a part in soldiers/sailors having the Gulf war Illness but cant find much research being done in that area.

Well its great to find a forum with a thread for Naval personel. Unfortunately, we're all (or most) having serious health problems and concerns with the Veterans Administration :nono: and our government in general. I suffer from Fibromyalgia, Myositis (a rare chronic muscle disorder), Diverticulitis (colon), Irritable Bowel Syndrome, Type 2 Diabetes, Insomnia, 40% loss of feeling in the right side of my body, memory loss, fatigue, Migrain Headaches(which are getting better) :D and well, since the onset and progression of these ailments, a bit' irritable in general !!! I served proudly on-board the USS Durham as a Gunners Mate and sat off the coast of Kuwait City during Sheild/Storm. As I've read through most of these submissions, some great advice has been given here. I've had to deal with "mis-quotes" in my medical reports, patronizing remarks and overall ineptness from the V.A. and its health care providers (I've been sent to private practice physicians for pain management and massage therapy, yes Massage Therapy which the VA completely paid for). At one point, I was taking 27 pills a day. During my Gulf War Registry exam, the Nurse Practioner quoted in my record "he uses his cane for emotional support". Well she can go drink a few beers and get behind the wheel on the "Autobaun". Sorry to make that remark, but that just tells you what I'm (we're) up against. Please, all of you who read this post and have problems that the V.A. is handling, stay on top of your medical records!! Get copies of every visit you make and point out faults/mistakes to the "Patient Represenative". All V.A. Hospitals have one. I also am using the Disabled American Veterans to help me with my claims, ask specifically for one familiar with the Gulf War Illness "situation". I can tell you this, in the last 6 months since I have began mentioning GWI, the VA has been getting on the ball. They might not know what the heck they're doing or looking for, but feel free to have a second or third party physician(s), outside the VA, to look at they're findings and results. I really feel at this point a serious distrust, and no I don't belive I'm being paranoid. From what I've seen they are out to disprove, in any way, a connection to military service. If I were them, I'd probably do the same thing. I'm having MRI's and EMG's done in two weeks, hopefully this will start to get to the bottom of my condition(s). Our local ABC affiliate is going to do a story about my situation during "sweeps" for an entire week in July 04. I want everyone to know what a pain it is to be compensated and to go through Social Security Appeal process. I wanted to do it anonymously, but I decided it would be better to "put a face on it". I'm also going to Write Bill O'Reilly of Fox News, repeatedly if need-be, and tell him OUR plight. PLEASE, get involved with your newspapers, T.V. stations and your congressmen and represenitives. If enough of us reveal ourselves WE CAN'T LOSE!!! In closing, my best to all of you. At first I was angry for myself, now I'm angry for US!!!!!!!! Matt S.

Hello guys, I have read all these posts concerning Naval vets and your health issues. I am interested in any Vietnam Naval vets who are having health problems that seem related to Agent Orange and never set foot in Vietnam. It seems I talk with so many who have the illnesses that were related to dioxin exposure. Could it have been in the water? What chemicals were used in the water purification system that maybe could have exposed them? There is a report that states the rate of lymphonma among Navy vets is 58 percent higher that the ground troops? But to date, I cannot find any medical reports to state why that is. Any information you may have would certainly be appreciated. Wife of Vietnam Navy vet.

DeadManWalkin....

Just read your post. I'm always postin' in the "Gulf War Ailments" thread. I see you have pretty much the same stuff I have and have experienced the same problems with the VA.

You must've been in the same flotilla as me. The one that steamed up the Gulf and the Princeton & Tripoli hit the mines. My unit jumped off during the ground assault & we went up into the desert just behind the berm breaches to support the 1st & 2nd MARDIV.

I still say it wasn't planned that way. You know, the clandestine operation. Our CO told us the Navy missed mines and we were stuck in a field with mines 50 miles behind us and 30 miles ahead. I don't think he'd have lied being we didn't have cell phones, or the internet, and mail took weeks to get to the states. I still say they changed it to make it look like that was the plan.

Anyway....

There is a law on the books that lets you file for an ammendment to your records if the VA "docs" have been puting "derogatory" statements in your records. It's in the CFR38. I hate it when I sit there and me & the "doc" discuss my illness and then when I get copies of my recs, nothing that we talked about is in there.


ottohpd2576....

You were up that way too as we headed for Faylaka Island.



What happened? What'd we get into? I feel like a steamroller rolled over my body or I fell off a 10 story building. Like I'm 80 years old.

Let me urge all of you to file now if you have not yet. It will take many many years to get anywhere with the VA. I understand that you can make more with out it Wes. Untill recently I was a successfull Software Engineer making six figures.
It got to a point where junior engineers were having to fix my mistakes too often. I just couldnt remember stupid little things that I now I knew. Would fall asleep staring at the screen. Then other times just couldnt get my mind started or into it, not sure how to describe that. Like foggy. Anyway, I too did not want to go "crying" for money. I just wanted to get better. That was my stance all along. Now, thankfully I had disability insurance that has covered me for a while ( thats likely to end in spring if they have fixed these siezures) and I am recieving ssdi at 35. Nothing from the VA.
My Neuraologist says its GWS and that there is nothing we can do except treat the symptoms. So I get lots o drugs and keep looking for new ways for them to stick me in hopes we will find an answer.

For those headaches Wes, Divalproex took care of them for me. Neurontin seemed to help for the general pain for a while though now we have had to add morphine and oxycodone to mange it. Provigil will keep you a bit more focused and awake. And those are the general bits. As far as the rash that seems to come and go each year.... no suggestions there. For Apnea Mirage Ultra mask is the best. You got to stick with the machine for a few months to really start felling any better. Wont make a huge improvement cause thats not why your fatigued but it does help a bit and you wont snore anymore. Do any of you out there have siezures? This is something that has creaped up recently and I was common.

Wes if you want to try and pull attention to this I will help all I can. Was there the first time we all tried as well. I have tried getting folks I know to watch that flick Thanks of a Greatfull Nation. Seems they get more of an impact out of that than anything else. A word of caution. Last time the media got in on it they prtrayed it all as a mental thing that was not similar from person to person at all.

Semper Fi,
Bud

WES0007, I don't know if I have talked to you before or not but let me share some info with you and others. There are so many of you guys out there that are very ill and were all ship stationed. You were victims of the multiple Anthrax vaccines that were given to you state side and while at sea. This was the first time the military had ever given service men and women more than one dose of Anthrax, by giving you more , they thought you would
last longer on the fighting field,where ever it may be. These multi Anthrax
vaccines had never been tested on humans before and that was against the
law. I followed the congressional hearings on this, the veterans finally won thier case about 2 years ago. Now when anyone enters the military they
can sign a waiver, so they don't have to take the multiple Anthrax vaccines
if they don't want to. It came a little too late for my son, he has already had to have a liver and pancreas transplant and is still very ill. He went on the Med Cruise, it was the multiple Anthrax vaccines. Some of the vets are getting back pay because of this tragedy. Some people have died. So keep going to the doctor until they know exactly whats going on.
Hope this helped you some. Contact your congressmen and tell them
that you need thier help with the military, that's what we did. Take care,
KARENJ1236