Desert Storm Illness --- WhiteBeard

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LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 5/17/2009 12:06 AM (GMT -6)   
This is like so off topic but sorta not.
 
My husband was in the first desert storm and he dealt with Urainum head bombs daily to dismantle tanks.  When he came home after a year in the sand within 6 months he started to get rashes on his face, armpits and groin.  Lesions would occur with a really nasty smell.  The lesions when they healed left alot of scarring.  To this day he still gets them.  His muscles and joints hurt.  All his joints are stiff he has even fell down our stairs cuz his ankle were locked up.  If he sits to long his back locks up, he feels like he has growing pain, deep aching muscles throughout his body.  He has Iritable bowel syndrome, acid reflux, gas, cramps and so on. He has extreme restless leg sydrome.  His hands and feet fall asleep.  He twiches and shakes like he has Parkensons but hes been tested for that and it came back negative.  He was also diagnoised with Hymotomacomatosis????  Liver problem.  It will show up then leave.  Over and over again.  His cholestrol level is through the roof and his trygicerides are 899.
 
This is just a few aliments.  But hes stubborn and just keeps going working 60 to 70 hours a week.  He says alot that he feels like hes 80 when hes only 39.
 
Can you tell me where to start to research this topic?  Hes now agreed to be seen for all this.  He used to go to the VA but they weren't much help.
 
Your help on pointing me in the right direction would be so WONDERFUL........
 
Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3305
   Posted 5/17/2009 12:36 AM (GMT -6)   
Laurie
You might want to try this: www dot va dot gov/

Or try this: www dot veteransadvantage Dot com/index dot html

Or definitely try this one: www dot vawatchdog dot org/

This last one should get you somewhere I would think, the VA one try contacting them and explain what the problem is. I sure hope this helps. Please let me know if this is what you need or if you need something else !

White Beard


  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 5/17/2009 1:37 AM (GMT -6)   
Thank You Thank You Thank You

I found what I needed on Watchdog. Everything he has is listed and as of 2004 it is acknowleged as a disability. Everything on there list he has other then Menstrel problems..lol

Your are my hero White Beard.......

Now if I can get him to file his claim now... Thats another story in itself hes so prideful

Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


ekkorose
Regular Member


Date Joined Jul 2008
Total Posts : 329
   Posted 5/17/2009 8:06 PM (GMT -6)   
Let me know what help you need with the claim, my hubby is a disable vet who works for the VA and I can pass on questions to him and find out a lot of info for you.

Take care,
Sarrah (e-mail me if you want) Its in my profile

Hysterectomy at 25

4 laproscopic surgeries since 24

Cervical stenosis in C3 & C4

_____________________________________________

 

Meds - percocet  3x day : nexium : xanax :

Supplements : calcium : magenesium :potassium : milk thistle : fish oil : B complex : vit E

____________________________________________

In the United States today, there is a pervasive tendency to treat children as adults, and adults as children. The options of children are thus steadily expanded, while those of adults are progressively constricted. The result is unruly children and childish adults. ~Thomas Szasz 


Frenchdude
New Member


Date Joined May 2009
Total Posts : 17
   Posted 5/17/2009 8:36 PM (GMT -6)   

Sorry to hear that Laurie.

Let me ask you, does your hubbie work so much because he has to or he is simply a workaholic. Should he have an option, he should try and make time to find out what he has and get plenty of rest at once.  His health problems are not going to get better exerting himself like that, it could only make things worse. He seems tough though, however, we all have our breaking-points. Sometimes our body talks to us and we don't listen. Been there done that.

Reading the symptoms, I just can't figure it out and connect the dots. I am baffled. Did he get a full blood test, something really thourough? They might find something like that. 

My though are with you and your family.

Frenchdude


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 5/17/2009 9:02 PM (GMT -6)   
ekkorse Thank you I will do that when I get him to sit down while I fill out all the paperwork.

French dude.... If my husband sits down he won't get up. He thinks if he keeps himself going it won't get any worse then it already is. He doesn't really have to work that much he just likes to have money saved up. He is REALLY stubborn and one tough cookie.

His symptoms are so much like Firbo and Chronic Fatigue, the goverment as of 2004 recognizes these as the Gulf War Syndrome. His symptons are very strange its like he has the flu 24/7.

Hes had blood tests and they did find chemicals, thats what is causing all the rashes and lesions. The chemicals are burning his skin from the inside out...

Thanks all for you comments

Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3305
   Posted 5/18/2009 2:06 PM (GMT -6)   
Laurie
Please keep us posted on your husbands progress with the VA, I would be interested on how he come out with it, I am have a 60% disability rating through the VA!

White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11396
   Posted 5/18/2009 3:23 PM (GMT -6)   
Laurie,
 
If your hubby has hereditary hemochromatosis, many of his symptoms sound like that is what is going on. It can be a wicked disease and can be deadly for some, are you aware of that? It can cause joint pain, arthritis, diabetes, cirrohsis of the liver, heart problems the list goes on. People with hemochromatosis have high amounts of iron in their blood and sometimes too much stays in the liver and can not be filtered out thru the liver. It can go to other internal organs and destroy the organs, some people have  had to have liver transplants because of the high iron destroying their livers. This disease never goes away once you have it, you have it and there is no cure for it either. Its a disease that can be mild to severe. 
 
My daughter has this disease and was dxd with it in her middle twenties. Her iron count was off the scale. She went to planned parenthood for BC pills for years and they always asked her if she ate nails every day for breakfast because of the iron count. No one ever told her it was not normal to have a high iron count. It was not until she actually went under the care of a general practioner that this all came full circle. She got a phone call to come see the dr to discuss her lab work done on a physical. Her PCP got scared due to the extremely high iron count-she made a call with my daughter sitting there to a gastro and she explained the abnormal labs and she was seen the following day and three days later having a liver biopsy. They call it the Iron Mans Disease, more common in men than women. My daughter now has diabetes, early scarring of the liver, arthritis and a lot of joint pain, she also has a skin condition that is a spin off from the disease. She also has some other problems from it and I cannot remember them because right now I am not feeling well at all, but I needed to post this for you.  Her cholesterol and tryglcerides were very high too. She cannot take any vitamins that have iron and has to avoid food high in iron and she does not eat any red meat.  She goes every other month and has a unit of blood taken out to help get her numbers down. Her gastro wants her there every month but she gets sick after the blood draws and will not do it every month. Now, she can tell by her body signals when the iron count is getting high. She really has to watch her diet with this disease. She has to have liver biopsys done to monitor the liver.  She is under the care of a gastroenterologist for the disease and she also sees a dermatologist for the skin problem all related. Her gastro gave her a name of a website in the very beginning that he recommended. He said it was the best one out there because too many have incorrect info being given out. I will get the name for you from her.
 
A regular blood test cannot dx hemochromatosis, there is a special test done for it. In addition, there is a test you need to have done to see if you have the disease or if you are a carrier. You can be a carrier and not have the disease, but it can be passed onto your children.  I had to have dna testing for the disease, her dad and her brother, she has no children. I am a carrier but I do not have the disease. As it turned out from the dna testing her dad and I both are carriers, neither of us have the disease, we are just carriers and  we passed the disease onto her. If you test positive on the dna testing then your children need to be tested too to see if they have the disease or if they will be carriers.
 
She also has to avoid alcohol because the disease involves the liver. So if your hubby drinks he needs to stop. I am not trying to scare you by no means. But, if this is the disease your hubby has you both need to get educated about it. He also needs to get in to his PCP and get ref to a gastro to see if its the disease kicked up that is causing his problems.
 
Susie
                                                                                                                 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 5/18/2009 5:27 PM (GMT -6)   

Whitebeard yes I will keep you posted.  Whats going on with him acually interests in on an educational level also. 

Straydog...  In 1994 my husband was experiencing stomach pains and cramping.  He went to Madagen Medical Center on Fort Lewis.  The testing and procedures started.  In the end thats what the Dx was.  They pleaded with him to stay at the hosptial to postpone his release from the Army.   By this time we had already picked up our tickets on base to fly to Florida.  He promised the doctors he would see the doctors at the VA in one month as soon as we get back.  They wanted liver biopsies and to do the removal of blood.  They agreed and let us go.  During this trip my mother in law had large prayer groups by large I mean 2000+.

One month later we returned he went straight to the VA.  First blood test came out low iron levels.  They retested a dozen times over 3 months each time came back low.  Doctors asked him many times if he had gone to the VA in florida for the removal of blood.  But we hadn't.  So we thought it was gone or had been misdiagnoised.  On occasions his iron level will get high but he loves meat, his steaks are his best friend.  He likes his beer he says he helps with the pain he feels.  (yes I know its an issue that we deal with he should cut back ALOT)  Over the years its came to mind about getting it checked but this man is like he-man, (thats what I call him) he can do anything, hes stubborn, hes strong, hes independent, and he hates taking time out to see doctors.  When he has free time when not working from 4:30 am to 4:30 pm 6 days a week hes coaching all the kids sports (thats what tore his rotary cuff), we spend time as a family and we do activities.  He always says lifes to short and he wants as much time with the kids and me.  I know if he doesn't take care of himself how will he be able to do everything he wants to.

This whole thing is like a puzzle to me.  I've sat on HW in all the forum looking and researching.  I want to be able to select the right specialists and find enough information for his PCP to head him in the right direction.  I'm a major organzation freak.  I will be the one filling out all the paperwork, reseaching and making the appointments.  I will have to go with him for he has a hard time expressing with speech somethings. (He stutters on occasions at times hes in a slight fog.)  If I go with him to appointments he can't cancel cuz he wants to work an hour over at work.  (Hes very dedicated to his job they would fall apart without him)  Pete will understand this one...lol  Sometimes I think I should demand that he get off work when hes suppose to that at 2:30 everyday. 

But THANK YOU I would never of thought that Hemochromatosis symptoms would be anywhere near what hes feeling. I guess this is the reseach project for tonight....

Laurie

 


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11396
   Posted 5/18/2009 5:54 PM (GMT -6)   

Laurie thats why I responded to your post.. I saw alot of connections with the hemochromatosis reading your post. Its very possible the disease was mild in the beginning but thats not to say its has not changed, it can do that. I did not like seeing a 26 yr old with scarring on her liver from this disease, that made the light come on for my daughter that this was not something to kiss off. With her its been a progression of different health problems cropping up as time goes by, such as diabetes three years ago.

You hubby is the typical man when it comes to health. But, in all fairness to you and his children, living for the moment is great if you are single, ask him if he would like to live long enough to see his children grow up and play with grandbabies with you. I am battling with mine right now over his diabetes being way out of control. He is on pills now, he has three months to get his act together or else its shots. His mom was diabetic and lost part of her leg to the disease he has the same potential, severe circulation problems in both legs, they are black at the bottom instead of the normal color. I finally had a belly full of his BS and I just laid it out to him-you have a one grandchild that idolizes you, you profess  to me nearly daily how much you love this child and how much he means to you. If you love him as you say you do, take care of yourself for him if for no other reason. I reminded him how much that little boy depends on his PawPaw, Pawpaw can fix or make anything in that little guys mind. When we are young and your alls age we really do think we are bullet proof, I was the very same way until I got sick. It has been a real eye opener.

Get him to submit to lab tests to monitor the iron levels, thats the key factor in not letting the iron get high. My daughter works a fulltime job too and arranges to have her labs done late in the day and she has found a place to do her blood on Sat.

One of my favorite sayings is: you can lead a horse to the water to drink, but you cannot make him drink:lol.

Just read up on it and get him involved to see what can come along with this disease. Like I said, it does not ever go away once you have it. My girls PCP ref her to a gastro for the treatment and he has been great with her...Susie

 

 



LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 5/18/2009 5:59 PM (GMT -6)   

I say hes stubborn but I will have to admit I am more stubborn.  I will get him to do everything I want and I will kill him with kindness the whole time... yeah

If I take the lead he will continue to follow up on all this.

Once again thank you and I will find the right specialist for him within the week

Laurie


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11396
   Posted 5/18/2009 6:16 PM (GMT -6)   
You go girl I have every bit of confidence in you that you will get this taken care of lol. Susie


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3305
   Posted 5/18/2009 9:06 PM (GMT -6)   
Laurie

You tell your Husband that is he is a very fortunate and privileged man! Because he really is! He has You taking care of, and looking out for him! He is indeed a very lucky husband!
I wish you both well!
Good Luck to You

White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 5/23/2009 6:04 PM (GMT -6)   
Update I have made an appointment with a GI doctor for simple testing. We asked if we could have the test done twice they agreed. I reseached it until my eyes where swollen...lol It says theres a test for transferrin saturation levels. It also stated people with these symptons should be tested,

Doctors should consider testing people who have joint disease, severe and continuing fatigue, heart disease, elevated liver enzymes, impotence, and diabetes because these conditions may result from hemochromatosis.

With the heart they also stated that an irregular heartbeats. My husband been told he has a silent heart murmor. Joints always hurt, fatigue daily for years now, always has elevated liver enzymes and has dealt with impotence for years now. (don't tell him I said anything about this sympton..lol)

I have decided to print out the VA disability forms and will fill them out over the weekend. I wrote myself a long list of doctors hes seen over the last 17 years so we can get all his records. Hopefully by the time he sees the GI doctor we will have all the paperwork filled out and have all the signed release forms ready.

Am I forgetting anything?????

Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 8262
   Posted 5/23/2009 8:22 PM (GMT -6)   
Laurie
will send lots of Prayers and soft hugz to keep both you and
your husband in good hands and with good doctors, Is their
anyway you could get a single floor (1-story) house? that way
you'd not have to worry about is falling at home. ( just a thought)
Just keep up your hope in these trying times...
((((((((((((((((((((Laurie))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


Mactac3
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/20/2012 3:59 PM (GMT -6)   
I'm new to this blog and so I just came accross this today.  Are things any better?  Is he still having the same problems?
 
I'm also a Desert Strom vet.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11396
   Posted 1/20/2012 5:26 PM (GMT -6)   
Hi Mactac and welcome to Healing Well's chronic pain forum. I do not believe I have ever met you before and I am going to ask you to start your own introduction post here at the forum so all of our members will be able to give you a proper hello and welcome aboard. By posting here on an old thread most of the time they get ignored and no one see's who has posted recently.

As you can see there has been no activity on this post since May 2009.

Again, welcome aboard.
Moderator Chronic Pain Forum

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 4994
   Posted 1/20/2012 7:08 PM (GMT -6)   
Hello Mactac3!….I have sent the original poster an email since this was a special post and involved a military operation of sorts.

Hopefully they can give you some good news on what has happened since then. I hope you start a new thread, just incase they would like to visit with you about this.

There is no guarantee that they will reply back to my email, but I will let you know if they do.

SE wink
Moderator Chronic Pain Forum

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