Gulf War Veteran with MS "Hug"

[Aether]

I am a Gulf War Veteran with symptoms that match the M.S. Hug perfectly. I see a person on here called "Struckanerve", who described to a "T" what the episodes feel like, all the way up to the lesion on the spinal cord, which I have plus Subarachnoid webbing in the spinal cord as well at the T7. I test negative for M.S.

Any assistance would be most helpful. These are my symptoms:
I have had it since early April. 2012. Some days I also feel as though my bottom rib is being yanked off.

It begins with severe pain in my back, then travels around my trunk to the front of my chest and feels like a giant is squeezing me to death. I also have terrible coughing and leaning forward (Like Stiff Man Syndrome) because the pressure is so great I cannot breath. It feels like trying to breath in a balloon inside a small bottle and I can not get any air to move. My O2 sats drop into the low 70's when the episodes happen.

I have had every false diagnosis from Stiff Man Syndrome, to ALS to Lupus to PTSD to Anxiety to Diabetes. I am negative for all including M.S.

I have been on the following medications, none of which stop the episodes (excuse my spelling, my wife/caregiver is typing this and she is not a good speller).
Gabapentin
Lorazepam
Baclophen
Ultram
Tramadol
Sertraline
Diclophenac
Ibuprophen
Norco
Vicodin
Methocarbamol

With the M.S. Hug I also get bloating and fecal dump with gas and belching. Also ruled out was acid reflux and any kind of bowel issues.

When the attacks are over, I am so fried that I can do nothing but lay down and try to recover. headaches also follow and can last for days.

I would love any help or additional information. Although tests show lesions and the Arashnoid webbing on my spinal cord, I test negative for M.S. (MRI with and without Dye) and my pulmonary function tests come out normal.

Because I am a Gulf War Veteran, I was exposed to Sarin Gas, Depleated Uranium and a host of other things like breathing the oil fires in Kuwait for months during the Gulf War. The Army also used non-tested vaccines on all of us so who knows what was in those. Are there any Veterans on this list with the same symptoms? Can someone test negative for M.S. but have it? Any help would be greatly appreciated as the Doctors have pretty much given up on me and are complacent to let me live a miserable short life until this kills me. They just shrug their shoulders and say "They don't know".

I have also tried CPAP, O2 and a Nebulizer with Acetylcistine and Asthma Inhalers. Nothing helps except the Norco for the pain but just dulls it a bit.

Thank you.......

[Seasha]

Welcome to MSWorld, Aether!!

(I moved your post as I felt it was important to have you start your own thread rather than attaching it to another thread.)

I'm am so sorry you have been run through the mill of misdiagnoses, but it's good that you don't have those diseases. I know from experience that getting an MS dx can take a long time. Have you been seen by a neuro who is an MS specialist?

I can't give you any suggestions other than checking in with our other veterans in the armed services. The forum is here: http://www.msworld.org/forum/forumdisplay.php?f=91

There are many well informed and supportive members there as well as our MS community at large. I truly hope you can find answers down the road. In the meantime, you take care of yourself and come back often and ask any questions you may have.

Most importantly, thank you for your service to our country

[Marco]

Some of the symptoms you describe might be labeled as "medically unexplained illnesses" which you can read about here: http://www.publichealth.va.gov/expos...ed-illness.asp. If you are not already receiving disability you may be able to qualify based on your diagnosis or lack thereof. The current deadline for filing for disability related to the Gulf War is December 2016. The process is horrible, the treatment miserable and the results are often worse. The key is to get your claim in before the deadline and then set up for a 5-10 year battle with the VA. Of course, this has nothing to do with you getting the proper medical treatment so let’s discuss that aspect.

Civilian doctors are not going to know much about what Gulf War veterans went through or the exposures you had. You had environmental exposures, weapons of mass destruction and mega-drug cocktails of unapproved medications and doses that most doctors will never see. You need to get to the right VA doctors to help you. Are you being medically treated by the VA? If not, please apply immediately. To qualify for VA - Medical Benefits you can fill out the form at the following link: http://www.va.gov/vaforms/medical/pd...-10EZ-fill.pdf The VA estimates it will take 30 minutes to fill out the form. You should automatically qualify for Category 6 because of our Desert Storm deployment. This link shows that you qualify for benefits: http://www.publichealth.va.gov/expos...ealth-care.asp. This has no compensation benefit, but will enroll you into the VA system and provide medical benefits.

Now that you have enrolled in VA healthcare, you want to get your VA primary doctor to refer you to the WRIISC (http://www.warrelatedillness.va.gov/) for evaluation. They may try to give you the run around. If so, speak to the medical liaison officer at your clinic. At WRIISC, you will be tested like a lab-rat to see if they can find anything wrong with you. They will spend time going over every ailment and trying to find a root cause. The difference is they will test you like a lab-rat, but will treat you with respect. I've heard nothing but positive stories about the care you will receive there. I believe this is your single best opportunity to find answers to your questions, begin to receive appropriate medical care and hopefully help you get some of your life back.

I would love to tell you there are easy answers, but there are not. The VA is still fighting to deny Gulf War Veterans and 80% of claims are denied. You will need to fight them for you and your family, but you can do this. You’ve been through more already ... just do not give up and do not give in to them. The other thing is you need to sign up for facebook and then look for Gulf War Illness Groups. They have a ton of helpful people and great information. You can also try http://vets.yuku.com and http://www.hadit.com as additional resources for your questions. Lastly, I want to thank you for your service to our country and apologize for the way we treat our veterans. It’s deplorable to say the least. Godspeed to you and yours.