I'm a Desert Storm Veteran who was exposed to several toxins in Iraq in 1991. My first symptoms were severe pain in my upper arms. That subsided, then I had trouble with my speech, walking, and severe pain in my muscles. In 1998 they subsided as well. Now since October of 2008 I've had severe pain in my muscles along with severe, burning pain in my upper right thigh, twitching and jerking in my arms and limbs, a zapping type feeling in my tongue and all over from head to fingers sometimes to my toes also. I have vision problems with these zapping feelings, it's like a silver ring that turns black then disappears all within a few seconds and happens quite often. My legs are numb and my right leg goes completely numb at times. I had an MRI of my brain on Dec 9 and my dr at the VA called me at 6pm on the 10th and told me "Few gliotic foci in the cerebral white matter bilaterally and patchy abnormal signal in the central pons of unclear significance" now does anyone know what that means? I do know that Desert Storm Vets have a higher tendency to have ALS or MS so I was wondering did this fall into those two fields. These problems I'm having are getting worse fast. I take Neurotin and Baclofen which helps my muscle pain a lot and oxycodone for my lower back pain but my symptoms were before the meds so I know it isn't from them. Any help would be appreciated...also my forgetfulness is getting worse. It sometimes takes me a while before I can swallow, not often though. I also had a mri of my neck, it showed I have several discs messed up and pushing on a nerve but not enough to do this the neurologist said. Thanks for any help.
What the doctor was trying to tell you is that you've had some neurological changes in your brain. I can break it down, and my knowledge is from memory, but the "gli" word has to do with neurons, and "foci" has to do with changes. When he referred to "white matter," this has to do with the kinds of nerves that have a myelin sheath that goes around a nerve, the sheath is white; whereas gray matter is nerves that don't have that sheath. The white covering on the nerve is like the plastic that goes around an electrical wire, and if they are damaged, which your doctor in essence said they were, it'll short out, just like a wire. That's what causes the symptoms of MS. The myelin sheaths get plaques on them, which the plaques are more or less equivalent to "foci," and that'll cause your nervous system to misfire.
The part of the brain that he said was "cerebral" is the main part of the brain called the cerebrum, which is what we think of when we see a drawing of what's inside the skull, and they'll refer to diff parts of it by saying temporal lobe or occipital lobe and so forth, and it's divided in half, thus the term "bilaterally" means both sides. Those lobes control things like sensations, motor activities, and thought processes, vision, among many other neurological type chores.
Now, the part about an "abnormal signal" is referring to the location where electrical pulses go between the cerebrum I just talked about, and the spinal cord, and this intermediary area is called the "pons." This means that your mind is telling your body do stuff, and vice-versa, but the signal isn't getting through. In both parts of your doc's sentence, tho, they are kind of downplaying it, which is a good thing, relatively speaking.
If you combine those neurological findings with your history or symptoms, which those include a relapsing kind of deal where you feel wierd and then you don't for a while, and also a variety of other symptoms like pain and numbness, vision problems, muscle jerks, forgetfulness, and all the things that have been bothering you, those symptoms and what the doc told you point to a possible diagnosis of MS, which you will read about in the link I gave you. It may be a dictionary website, but it's a very good one.
Your physician should do a spinal tap to look for immune proteins. This is because MS is an autoimmune disease. What may have happened to you is when you served during Desert Storm, like for many other soldiers, exposure to toxins or viruses is a known risk, and this sets off the immune system to fight off those invaders. But then, perhaps in people who have particularly sensitive immune systems or maybe because the alien invasion was overwhelming, immunity just keeps on ferreting out anything that looks like their enemy, and your body's cleanup crew winds up gathering as plaques on the myelin sheath of nerves and tries to destroy them.
Keep in mind, if you do indeed have MS, there are lots of good drugs out there to help control it, and many people can live a regular lifespan without too many ill-effects from their symptoms. So, depending on what kind of MS you have (some kinds progress faster than others), then the sooner your doctor can start giving you those MS medicines, thus obviously the better off you'll be. In other words, you don't want it to progress too quickly or you'll wind up with more problems to fend off.
I am not a doctor; I just have complex problems from tearing up my spine in a car wreck, so I am merely familiar with some of the crazy neurological stuff that can happen to people. So, your doctor may take an approach of wait and see, which is not exactly unreasonable, and could even be those immune proteins did not show up in a spinal tap, altho that's not an absolute in arriving at a diagnosis, or maybe your doc will use his years of experience to back up the idea that you not have MS. It's just I think you do. Therefore, if I were you, after you get his feedback on your health issues, take the whole works over to another neurologist who is expert in MS, someone who is really great, like hospitals in a university will have those kinds of folks, and even if you have to travel, get thee a second opinion. I should say, too, that the military has some of the best docs around, so even within the system, any second opinion will do.
I might add that I know exactly how you feel, because I was young when I lost SO much due to what I refer to as illness. Ilness is like that, it's a different animal than regular life. Like Clint Eastwood said in Unforgiven, "Killing a man is a h-ll of a thing; you take everything he's got and everything he's gonna have." Of course, illness is not death, but it affects people in a similar sort of way. Things change dramatically and it takes some getting used to, that you can't do exactly what you'd like so much, you know, you lose a little freedom. Real frustrating. But in the end, with medications and so forth, and time, you'll adapt and wind up happy as you always were. Hang in. GG
Thanks so much for the info and the link. You are right, it does have the best info. My severe and different pain (different from my Gulf War Unexplained Illness) started in Oct of 2008 after a car wreck I had in Sept 2008 where I had whiplash. I went to a chiropractor and she helped my back problems but not my head so I quit going. I went through 4 doctors at the VA since 1991 because they just wanted to medicate me but this one I've had since April seems to be trying to help.
I had these same symptoms soon after I entered Iraq in Feb 1991 but much less in severity. I went in Iraq with the 24th Infantry Division and was only there about a week and a half. I worked really hard but when we were leaving I felt like I had the worst case of the flu. I had to lay down on the floor board of my 915 truck which is a 2 seater so my head was under my co drivers legs while he was driving and my stomach was around the trans case and my legs were at the passenger side floor. Kind of like an S shape. I was so sick I couldn't hardly move and I just had to lay down and sleep or semi sleep. Kind of like having chronic fatigue syndrome. After getting back into Saudi Arabia I had severe menstrual bleeding and I had to go to the 8th Evac Hosp and was told to see my gyn when I got back home...I returned home in May 1991 and I had to have a hysterectomy in Sept 1991 because I had cervical cancer. I already had 3 children so the dr recommended the hyst. I had a complete physical from my doctor and dentist in October 1990 before deploying because I didn't want any problems coming up and the military saying I had problems prior. My brother is a Vietnam vet and he told me to do that because of the problems he had with Agent Orange and the VA when he returned in 1971. I'm so glad I listened to him.
I had pain in my upper arms before I returned home but I thought it was just from working so hard but in July 1991 my upper arms were hurting so bad I would wake up in the middle of the night and I had my husband massage my arms so hard it felt like frozen meat..I can't explain it any other way. I would go to work with bruises all over my arms from him having to rub them so hard. My husband was so scared because I kept telling him to rub them as hard as he could and it still didn't ease the pain. That lasted for about a year then they went away and I just had the unexplained all over body and joint pain which I was taking about a bottle of tylenol a month along with goody powders. While working I started getting flu like symptoms every time I would walk into work. There were some big tubs with chemicals in them but nothing harmful because I had the FD come and check them out. The tubs were in the basement of the police dept and I would just walk past them and get on the elevator. Just those few seconds were enough to just lay me out before I made it to the radio room. Every time I would go into Walmart I would get so sick I had to leave after 15 minutes. Some stores didn't bother me but I just got so bad I quit going into stores and let my children run in there for me. I had to wear braces on my wrists but I didn't have carpel tunnel.
In Jan 1997 I finally had to quit work. I got on SS and some VA benefits for my back I had an injury in the lower part. I had started walking with a limp. My speech started slurring. My memory was baaad. My concentration was awful. I had spasms and twitches all over and pain in my upper right thigh. I had severe fatigue but not CFS says the VA. I had fibromyalgia type syndrome but not says the VA. I started on Zoloft for PTSD in 2000 and my symptoms almost went away but came back periodically. I thought the zoloft was the cure because I read that it helps nerve problems. I was on it until 2007. I decided I wanted to have emotions again instead of being a cold hearted woman. I would have periods of pain and twitching and spasms but nothing too major until October 2008. I got back on the zoloft but it didn't help so I figured it wasn't the cure I thought it was after all. I don't know. I just know that since Oct 08 my life has been pure hell. This year I've been diagnosed with CFS and FS the same day by two different doctors. I now know what CFS really is. I thought I had fatigue before but that's nothing to the real thing. I always know when it's coming on because I get a sore throat the day before. The next day I have to stay in the bed even if I just woke up I have to lay there with my eyes shut because I'm that fatigued. I kept telling my new doctor that the 10mg of oxycodone 3 times a day was not helping my all over body pain, he refused to up the dose, thank God. He tried me on toradol for the breakthrough pain but no help so he put me on Neurotin and my rheumatologist put me on baclofen the same day. They both said it may take a week or longer before I would see any results but I started the meds as soon as I left the VA and the next morning I woke up and I didn't have to roll over and take my oxycodone just to get out of bed like I've had to do for over a year. I was on Neurotin in the late 90's but it didn't work but the two together works now and I've been on them since Oct 09. I got the swine flu the second week of Nov and then pneumonia so for 3 weeks I was sick. I then started with the muscle twitching and eye problems..same symptoms but more severe. Worse than ever. Now since yesterday my twitching and symptoms has ease up some. I can sit here and type without it taking me 3 hours just reading and re reading and fixing a bunch of errors. Every now and then I can feel a twitch in my arm or leg but nothing like before.
I've had MRI's of my brain since I returned from Desert Storm, maybe 3 and nothing ever showed up until the one I had on the 9th of Dec. So how does all of this sound to you? I know that the VA is doing studies on neurological disorders like ALS, MS, Parkinsons, to see how come Desert Storm Vets are getting them at a higher rate than the general population. I just wonder how long I will be in this so so state..I feel like I'm walking on egg shells and not wanting to do anything to bring back those severe symptoms. It's horrible. How long can people be in remission before another strike comes along? I also read in a post on MSVETS yahoo group site about a doctor in Italy doing some research after his wife had MS and found that it's more likely a disorder in the veins like they are blocked or something and after surgery there have been major improvements in many people but said the US isn't taking it too seriously. It said it could be a build up of iron and blocking the arteries. Here is the link just to get a better understanding, I can't interpret anything..my mind won't let me. Thanks again GG and sorry this was so long.
I have a reply for you, but we just had to switch computers, and husband hasn't retrieved the rough draft yet. But my draft took a while to put together, it breaks down your symptoms into a logical sequence and offers more ideas for you. As soon as I can access the draft, I'll ready it and post. I was waiting for time to read your link...however, today I could not get into that website, as it apparently requires a password. But my immediate thought was if you do not have MS, then a cardio guy can check out your arteries and veins and how the heart is pumping and all that sort of thing, if there's anything to that link's Italian idea. I'll get back with you soon, I hope, with my response.
Thanks I will look forward to it. In my mri results it said no malformations in my veins or anything so I guess that's out. I had to go back and look at my paperwork then I realized that the Italian guy maybe on to something but for people who don't have ms. I guess so many symptoms can mimic ms symptoms it can be easy to be misdiagnosed. I'm just looking for a miracle I guess for an easy fix to my problems I've had to live with for 18 years. I do know that many DS vets are being diagnosed with MS at a higher rate than the general population....that's very sad. Thanks for all your help.
My Dear Linda,
Got my reply for you. The way I see it chronologically, you were exposed to some virus or toxin in the Gulf in the early 1990s, and that set off your immune system to get rid of it. Your cancer was probably from the toxic exposure, as well, but harder to be sure on that issue. Then when you began to work where those chemicals were in the basement, your immune system was already on guard from the Gulf War situation, and it began to attack randomly all over again. This is what MS does, as I've explained before, the immune system attacks anything that looks like an invader, attaches to the myelin sheath that goes around a variety of nerves, becuz they look like invaders. This leads to a completely unpredictable and disorganized loss of function in lots of nerve activities.
So, you're going along, dealing with undiagnosed MS that was triggered initially back during the Gulf War, intensified by the chemical exposure at work, and you get in a car wreck. This, once again, will trigger the immune response, and since your immune system is some kinda fierce, it intensified your nerve problems all over again.
As I said, the docs need to do a spinal tap to see if there's immune proteins in there, and that will help lead to an MS diagnosis. It is important to get that diagnosis because you need the various meds they can give you for the condition, which will help you feel worlds better and help you live a normal lifespan. MS cannot be cured, as far as I know, so medication is the way to go, even tho you expressed not liking how that's all the docs want to do is throw drugs at you, but the stuff you've been given so far, while helpful, are not the only things you can be taking. The MS stuff will help you much better, you see.
I hope my sorting thru your health issues in a chronological way, connecting events to possible MS immunity problems, will get you the medications you need. Again, this is only my view from what I know about the nervous system. An expert in MS can help you the best, I hope you can locate a great doc in that field, and get the treatment you need, as soon as possible within reason.
One more thing, tho, and I think I already mentioned it, but your docs should not only do a spinal tap to look for immune proteins, they should also draw blood and do a comprehensive look-see for toxins, viruses, heavy metals, to see if you're carrying around a lot of that, on TOP of your MS thing.
By the way, thank you for your service in the war, we had just gone thru 9/11, and us people were wanting to do SOMETHING about uneducated, senseless, and power-hungry leaders overseas who thought they might get away with such rude actions against a peace-loving country such as us. I'm glad you helped show those maniacs that we are not going to put up with all that garbage. Hope you get those further tests and hope you get some diagnoses going, so you can receive proper treatment for them. Plus I want your mind to be put at ease, so you can accept what's going on with your health and move forward in a positive way. Keep us informed! We care!
Thanks so much for your time and consideration to my problems and history. I just had an emg done on the 8th of Jan 2010 and it was within normal limits but let me tell you, that test has made my symptoms so much worse. I told the doctor performing the test that the electrical currents they were putting in me were exactly the same I've been having all along, like little electrical charges going from my brain to my body especially my arms, and back. Ever since I had the swine flu in late oct and early nov 2009 I've been going thru some really tough times with these symptoms. I've tried to explain to my neurologist about my memory problems and I couldn't, but now I can...it seems like my brain thinks something but the rest of my body either don't follow thru or it jumps the gun on my brain. I realized how to explain it when I went to fix a ham sandwich. I got the ham out of the fridge and opened it thinking I already had the bread out because I thought about the bread, but then realized I hadn't taken the bread out of the bag yet. I went to make chocolate milk and got the milk out and opened it, got the spoon but I didn't see the chocolate and then realized I hadn't taken it out of the cabinet yet but I had thought I did because I thought of it to start with. It's like my mind is jumping ahead of me making me think something has happened because my mind saw it happen but I hadn't actually followed through with the process. Does that make any sense at all? I hope so because that's about the only way I can explain it.
The VA has sent me to another neurologist because that first one, she was a doozy..but I think this one is going to be ok. He has ordered a bunch of test like an MRA and other blood test. I had an apt with the eye clinic at 0830 this am which I told them I suffer from insomnia but was actually forced into this early apt at which I didn't make it because I couldn't wake to the alarm clock. I called at 0930 and had one rescheduled for feb 3. I really wished I could have made it this am because my vision problems are back since the emg. Do you know if an emg can make MS symptoms worse? Also my left arm has been giving out on me like it's extremely tired. It was my right arm but now my left. It was my right leg mostly hurting but it's now my left, but my right upper thigh like the femur bone still hurts constantly.
I know this is probably jibberish since I can't make sense out of what I'm thinking and trying to type it out is almost exhausting but I just wanted to thank you and also ask if you thought having an emg could trigger the MS symptoms. I really havent gone without any symptoms since Nov but for only a week maybe at the most. They get really bad then lighten up but never actually gone away.
I hope your Christmas and New Years were happy ones!
You know, your vision and your arms giving out sound like that MS. As for your brain going in slow-mo when you fix lunch, I know exactly what you're talking about. But for me, I take drugs to keep my mind UNfocused, otherwise I go crazy. So, I had to quit making breakfast because I could not organize getting stuff out of the frig and proceeding in an organized way. But that's the way it's SUPPOSED to be for me, and it is done on purpose by the drugs. If my presumptions about your MS are right, then could be it's that immune system goofing up your brain nerves, so those neurons aren't firing right. And yes, I have heard of that muscle test causing some remnant dysfunction where people feel electrical impulses in their body after the test, but I don't know why that happens. I hope your new neurologist will look a little more closely at the MS theory, but I'm no expert in it, that's for sure. It just seemed like you got it, and I just don't recall them doing a spinal tap to look for immune proteins for you. You poor thing, I know you are absolutely annoyed to the max with all this stuff, maybe they can give you a mild tranquilizer for a little while to help you cope, until they can come up with a definitive diagnosis. I also wonder if you have a lot of pain with all this, they should also give you meds for that, too, becuz pain can cause a person to have trouble focusing, in case it's NOT the MS idea. Thanks for updating us, I'm glad the docs are working the problem.
I too was in Desert Storm and was recently diagnosed with MS. I remember getting at least 2 letters from the government informing me of my unit being in a zone that was potentially exposed to hazardous chemicals. I remember the anthrax and other shots. I remember the air sirens and the CPOGs. I remember the oil fires, black smoke and the sun not shining for days. I remember coughing up black crap from my mouth and lungs. I remember the letter ... then again, my unit was there.
This is how I found out I had MS ...
I had EXTREME upper back pain and imflammation that got worse every day. A physician said," it looks like your trapezius muscle is clenched up and continued to just clinch more and more." For about 3 months, I had spasms and pain to the point it was hard to stand up.
My primary care physician sent me to get a MRI where they noticed some spotting in my CNS. Off to the nuerologist and a few more MRIs to see even more damage that suggested MS. I had a spinal tap and within a few weeks I was diagnosed with MS. A healthy round of steroids eventually freed up my back and life is fairly normal.
In 2008, the government funded research on possible links between Desert Storm and Mulitple Sclerosis. DS Veterans and civilians in Kuwait appear to have a much higher MS rate than the rest of the world. There are a handful of individuals that have actually gotten their MS deemed as a "service-related" illness - AMAZING!
I would not even know where to begin with the VA on multiple sclerosis, but you are in my prayers. Our beloved veterans gave and give so much ....
Well i guess i am jut in the beginning stages of this all. I too am a Desert Storm Vet and have had problems which would come and go for years and have been very sensative to cold, loosing feeling in my hands and few. I have noticed a increase in being forgetful over the past couple years and since December has have a strange tingling or electircal shock feeling in my legs and feet when i bend my neck forward. After going to see a spine and back specialist and not getting much help i was sent to a neurologise. I received my results back two days ago which state "Multiple, too numerous o count supratentorial white matter lesions sparing the midline and the brainstem. Possibilities include multiple sclerosis but other types of demyelination or various types of vasculities are possibilities. This is just the impression but there is much more on the report. The neurologist suspects MS so i am off for a spinal tap next week to have that done to await the results. I like all the information that has been provided and will def keep up with it
You definitely should contact the VA and begin the filing process for disability benefits. In July 2010 (approximately) many more illnesses were added to the list of presumptive conditions for Desert Storm Vets. I believe MS was one of them.
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