by PatronSaint357, 10 minutes ago
It's been awhile so I'd like to update.
Their are no signs of parasites or worms present.
I still have the severe abdominal pain and it gets worse when I eat. Also, about 4 weeks ago (after all of the CT scans, PET scans, Nuclear Medicine scans, etc) I've been getting random pain in my kidney area, mostly the left kidney. On top of that, all of my muscles in my legs (calves, hamstrings, things) ache horrible at times as well. I had a colonoscopy and a endoscopy about 3 weeks ago and I just found out Thursday that they found Titanium in a biopsy. The Lymphnodes that were swollen all in my upper torso have gone back down as of a month ago.
On top of all of this, my short-term disability decided to not send me my checks as they said my VA doctor wasn't good enough. After a month of fighting, they extended it for another month until April the 4th. They don't want to extended me after talking to my doctor, which I cannot work and I am in a bit of a jam. I filed a case with the VA for Gulf War Syndrome, which an old Veitnam Veteran who I ran into at the VA insisted that I do based on my symptoms. I haven't even heard of GWS or Gulf War Illness before, but I have about every sign the VA listed. I'm not sure how long that will take, or if I will even work again.
I'm not sure if I listed all of my problems, so I'll go through them.
1. Night sweats
2. Severe Abdominal Pain
3. pain in the kidneys, mostly the left kidney
4. chronic pain in my legs, though only the muscles though my left knee (which was operated on) does flare up from time to time.
5. I break out with a rash on my chest various different times a year.
6. I suffer from memory loss, which is getting a lot worse as I go on.
7. I suffer from fatigue, or chronic fatigue at times.
8. severe headaches at times.
9. abnormal weight loss (I went from 225 down to 170, though through GNC Protein Shakes I have been drinking like crazy I am up to around 180 right now which is good, but still pretty bad since I have lost all of my muscle mass)
As far as the memory loss, it's short and long term. I barely remember my High School Years and I always forget things people (especially my wife) has said.
Fatigue has been a constant since 2004 though I've always fought through it like everything else. I have always worked out and have kept my body in great shape, so I just looked at it as bad luck. The fatigue is random really, at times I'm just real tired especially in the evening. Sometimes I'll sleep for 10+ hours, sometimes I'll sleep for 6.
Regarding the stomach: No diahrea at all (maybe once or twice, here and there) and I don't go very often since I only eat 1 solid meal a day, even then I only eat a few bites then I get sick. The pain is a dull pain which isn't located anywhere specific, it's the entire stomach/abdomen area. No constipation either.
They have looked for Pancreatic/renal pathologies, kidney stones, etc. They tested my gallblader as well with a nuclear medicine scan. Their isn't much they haven't tested at this point.
I really would like an outside opinion, though I feel the VA is best suited if it is GWS or GWI or the like. It's frustrating though John, I was a healthy 31 year old man who worked in the IT field making really good money for a Government Agency. Now, all I do is set at home; I've worried about cancer, death and the like going through all these tests. It's hard for me to do anything, even going to the grocery store with my wife is a task. After that, I have to lay down and sleep when I get home from it.
If you need any blood work, test results, anything you just let me know. The Vietnam Vet told me to get every record of the VA working on me, as when you put in a claim records seem to "disappear" at times for some vets.
Dear Patron Saint,
I'm no expert or anything, and I only carefully read your original post and just scanned the rest, but I do know that if your abdominal lymph nodes get swollen, and perhaps abscess, they can cause your exact symptoms, namely the finding of swollen lymphs in the adomen that you had, abdominal pain, nausea and vomiting, loss of appetite, headache (which you reported in one of your other posts up there), plus feeling sick, and maybe fever. This thing is called Mesenteric Adenitis, and I looked up the symptoms, and there you were. The thing of it is, usually just children get this, which is probably why the VA has no idea what is going on.
Like all lymph node swellings, it usually comes from some virus or bacteria or even trauma to the area and infection, which you were sick just before all this other, and if the abdominal lymphs swell up, it can cause painful spasming in the area and also the swollen lymphs can become large enough to stretch the membrane that surrounds the abdominal organs which will hurt, and an abscess all by itself hurts. Usually this MA (my own shortcut) starts in the tummy area, and then moves on down to the lower right side and thus can be confused with appendicitis, and sometimes it's not until the surgeon is doing a laproscopic procedure that he discovers it's those abdominal lymphs that are causing all this trouble.
So, my thinking is, you got sick in January, and then you developed this abdominal pain with symptoms that are almost exactly like mesenteric adenitis, and so the docs do some scans and find your abdominal lymphs are indeed swollen, which they often are after an illness or whatever set this off, but they go and do a biopsy of your collar bone lymphs, which isn't going to do anything if, say, the swelling comes from an unknown reason...there are lots of reasons, and could even be, if I can hazard a guess, that if a virus did this and is now gone from the body, you get an okay biopsy but you're still left with some really goofed-up abdominal lymphs, which maybe abscessed and therefore are causing you worsening trouble. On top of that, there's actually a syndrome called Castle something where it gets so bad, that a tumor forms from all this commotion.
If I were you, I'd revisit the doc who has been helping (or not helping) you with this at the VA, tell him what I've said to you, and see what he says. If he rejects the idea, push him around on the issue, ask for at least a quick ultrasound, just to make sure that the lymphs are NOT swollen up like I'm thinking they are. But he could probably push hard on the area where these lymphs can be located or where you feel pain (altho sometimes a person with MA cannot point to an exact spot), and perhaps he'll realize something is amiss in your guts. The "cure" is to remove those lymphs, clear up any infection that happened there, and perhaps pursue what the cause might typically be, to make sure you aren't still sick with, say, things like mono or streptococcus, plus some other rather unusual origins, or even if you can remember trauma to that location at some point, he ought to also make sure all that isn't bothering you anymore.
I do have to mention, tho, that in scanning the other posts after your original one, that I recall a mention of breakout at the chest. That can have something to do with not enough oxygen getting into the body and perhaps a problem with the heart, which would take your docs down a road totally different than what I am saying, in which case I'm sorry I've spent so much time on this one issue. But I definitely don't know a thing about hearts, but that's at least another direction to go if this lymph thing doesn't pan out.
Keep us posted. And thank you sincerely for your service. War is hell. GG
And I just spotted your second post, something about your kidneys hurting, and do you know that those abdominal lymphs are actually located towards the back!?! Sorry, got to go now, will try to read EVERYthing more carefully when I get a reply back tomorrow or the next day. GG
Patron, if you're breaking out in a rash, make sure you're checked for celiac disease which can cause a variety of symptoms - some that be very extreme.
I myself am a Operation Enduring Freedom veteran. I got out Sept 2005 and in June 2009 becames severely ill. I have had 3 biopsies, on predizone for a year at a dose of 30mg or higher, I have been to every doctor back and forth. I will be getting a MRI on 19 Jan 2011. I have been getting Lidocaine Infusions every 2 weeks. Im 28 with a 4 year old son. I was working at the VA in Manchester NH untill Feb this year do to the pain and symptoms of my illnesses I had to quit.I have a the symptoms of GWS. The VA treats me like sh*$. I am in the process of writing my senator. I am looking for help plus other veterans like me so we can get together. We cant do much by are selfs but if we come together the VA will not stop us. I am 70% and waiting to go to med board. My best e-mail is michael.***@****. Take care and I hope some contacts me on this matter for me it has been to long. I would like to get help befor I die, my son needs me. Thanks, Mike Clark
Please post your question as it's own post.
My husband has the exact same problem as the original post. He is a patient at the Hines Va medical center. There is a gastro specialist there named doctor Sontag. Dr. Sontag actually did a research study on veterans from past wars that had these same terrible symptoms. He's wrote many articles on this subject as well
He helped get my husbands issues under control. I don't know where u are located but if u haven't found a solution yet u should look into making an appointment with Dr. Sontag. Best wishes