Unable to find diagnosis to physcial side effects looking for guidance

cschultz1978

PEB Forum Regular Member
Registered Member
Hello all,

I have done a lot of research on here and it has helped me a lot; however I still have not found a path to a doctor that can diagnose me much less help me yet so looking at CFS or the new Gulf War Syndrome

Endocronogist 2013-2015: All clear, yearly monitoring by MRI and blood testing. "Spotty T2 hyperintensisties in frontal lobe area of brain" was the only thing found and all my doctors say that is related to migraines and nothing else.

4 different PCMs 2013-2017: All testing clear. Xrays, CAT, ext of joints and back all clear nothing seen.

Neurologist 2017: Finally got pointed at MS and I was actually hoping for it. Sorry to say and incensitive to say for those who do have it so I appoligize, but thought it would be an answer. MRI brain and spine and blood testing done. Also did nerve testing of arms. All clear nothing found at all on any of it.

Neurotherapist Feb 2017: EEG testing done. Showed right side and right frontal lobe areas were not "firing" in normal ranges so started neurotherapy which is watching a TV screen and little blips going off. Saw NO improvement in any of my symptoms so stopped.

Psychologist Jan 2017: EMDR breathing, grounding, ext. diagnosed with chronic PTSD which is due to the social withdraw, anxiety, depression, ext.

Neuropsychological evaluation Oct 2017: basically memory testing because my long term, short term, and common sense are now issues. Came back below average or impaired in several areas mainly processing speed impairement. findings: anxiety, depression, PTSD.

I am still on active duty and was trying to make it to retirement; however doesn't appear it is going to happen. One of my doctors called the Army with "concerns" and that triggered the profile system to start which I assume will go to fit for duty board. I was on Tricare Prime Remote so keeping everything below the radar until last year when my memory started getting worse and I had to tell my chain I was seeking medical help to find out cause but it died from there.

All my doctors say mental now but that doesn't explain the physical in my mind. So I was pointed toward CFS or whatever they are calling the new Gulf War Syndrome. So I am getting a referal to a reumatologist now for diagnosis; however I don't see CFS explaining it all either adn was looking for feedback from the forum.

Basic symptom overview:
what I call "nerve" pain. stabbing fire like pain in knees, elbows, shoulder blades that comes and goes. Can last days or weeks when it hits.
same kind of pain in temples and behind my ear like in the bone. told it is a type of migraine.
Vertigo/dizzy spells that come and go
lower back pain. Like it seizes up, crushes in, can't hardly stand back up if it hits. comes and goes
Memory long, short, common sense. Long term like I can't remember life moments large events.
Anxiety, depression, social withdraw, life fog, groundhog day, everything is a chore even stuff that use to be fun like camping
Eye pain like burning and uncontrollable jumping of the eye comes and goes
spells of blury vision, bad night vision
uncontrollable trembling, facial twitching, finger twitching, muscle spasuming
slurred speech, mixing up words
sleep issues, I have a CPAP but no improvement as far as fatigue
always tired, everything a task

Could the doctors be right and mentally I am doing all this to myself? I just don't buy it but maybe.

I have spent tons of money out of pocket for specialties Tricare didn't pay for or for opinions from doctors not covered but still have no real answer except it is mental and all I can do is medicate myself with Xanax and Cymbalta for the rest of my life to treat the symptoms of PTSD.

Looks like fit for duty, PEB, MEB is in my near future so I am starting to read everyones experiences and it looks rough. Sorry for how long everyone has to deal with the process and the numerous fights you have to put up. I am weighing my options on maybe just doing the VA fight and ETSing without retirement at least I would just have to fight one government beast and not two. 16 years down the drain. I just don't know if I can stay on AD for the time it takes to medical board out.

Thanks to any feedback on possibel doctors I should be seeing to rule things out or find a actual diagnois.

I even reached out to one of those online doctors that specialize in VA claims to see if he could give me a clinical opinion of what he thinks is going on with me. He is a psychologist thought maybe he could explain from his experience how the above could all be mental or rule it out. Charges a good chunk but hopefully worth it. He said about 2 months to get it back.

Thanks to all,
Chris
 

tony292

PEB Forum Regular Member
PEB Forum Veteran
I would recommend getting a referral to get a full neuro-psych evaluation done. This can help point to a diagnosis at least for the mental side of it.
 

ramac79

New Member
Registered Member
I know your post is old, but I almost started crying when I read this! I am an O3E with 16.5 years in and those are most of my symptoms...I mean, it is disturbingly close! I haven't seen something that described the same set like that in all of my desperate searching for answers (the vision and cognitive changes really hit me). I could not help but notice the 78 in your name...close in age, perhaps a link there? I have been experiencing worsening symptoms over the course of 2 years and it got to the point I could no longer keep up with my awesome desk job! I have felt nothing but humiliation along the way thinking it must be in my head as well. I could not deny this was was a systemic disease I had little control over (outside of limiting all unnecessary exertion) when I began mixing up words and my cognition became severely impaired with any exertion beyond the most basic daily functions. My psychiatrist said other than intermittent anxiety, she was not seeing a mental health cause. I have been referred to IDES for Chronic Fatigue Syndrome (no combat or overseas duty outside of Guam) after find a phenomenal doctor who was truly compassionate and told me immediately, "This is not in your head." I am pending the MEB right now and just beginning to realize what I am losing career-wise; pretty frightening to drop 60% of my income (at best) if they give me the rating appropriate for how debilitated I have become... which I am also not confident they will do on the DoD side. I wish there was more being posted about this diagnosis so I could see how seriously this is being perceived at the boards. I joined the forum just to respond to you in the hopes you are still checking in and can share how things turned out for you (and how you are functioning 2 years later). Best wishes to everyone going through this life-altering process.
 

cschultz1978

PEB Forum Regular Member
Registered Member
Ramac79,

Luckily this website sends me updates. In the end they just Medically Retired me January 29, 2019. The IDES process uses the VA C&P exams to determine if they will retire you. In my case the VA had 12 conditions when they were done but only 2 were found "unfitting" for the DOD so those are the 2 they used. I fought to get PTSD removed; which they did and downgraded it to General Anxiety but it doesn't matter all mental health are rated the same. So they gave me 50% Anxiety (combat related) and 40% Fibromalgia. I am positive I don't have fibro but it was what they used since all tests came back clear for M.S. even the new blood test that is 98% accurate for it. iQuity Multiple Sclerosis test. I paid for that one out of pocket. Over the course of this thing I have spent thousands on treatments that are not covered by Tricare and have seen little to no improvement. I have seen just about every specialist times 2 and have a long list of diagnosis which none fit.

I just paid $1500 to Dr. Mark Gordon who after a lot of research has helped a LOT of soldiers like us. I haven't started the treatment yet so I can speak to the results yet but I will keep you posted. He thinks TBI which could come from many sources. My hormones are all over the map which fits his thoughts. A special Forces Green Beret Andrew Marr even wrote a book Tales from the Blast Factory. If you read his book you most likely would feel like me that I could have wrote the book minus the crazy combat missions he went through. I was not a SF soldier myself. His symptoms are identical though and I even talked to him on the phone and he said he is now almost fully back to his normal self and all WITHOUT Prescription medication. He is on a Testosterone blend and a lot of supplements that help your body balance out its own system.

Feel free to send me a private message through here if you have direct questions along the way.

My VA rating was estimated at 90% at separation; however the VA found 3 conditions and the Fort Hood WTU found 2 conditions that they wanted me to add while at the WTU to my claim. I should have waited to do that.... My VA decision was supposed to be done Feb 28, then it moved to March 28, then to April 28, then May 28, and now June 16. They are gathering evidence again for those new conditions. I should have taken the initial 90% and then added the new conditions after the fact. Luckily DOD was fast and I am getting my medical retirement pay; however until I get my final VA letter I CAN NOT apply for CRSC (combat related special compensation) and I CAN NOT use VA Vocational Rehab services to help me get back to work in some other field.

The only thing I can say is prep before you separate. Get all your medical files on a disc and in hard copy form to carry around with you. If you used civilian doctors like I did ALWAYS have those files. Every VA or DOD appointment I went to they couldn't access those files because they were housed in some other system that not all the parties can access. It was a very frustrating process.

This is some information on Dr. Mark Gordon. AGAIN THOUGH I just got my blood work back and haven't started the treatment yet so I can't say if it works or not at least for me; however if you read a bit about him you will see a lot of soldiers that say it turned their world around. I have my fingers crossed in high hopes.

Joe Rogan:
Joe Rogan Experience #574 - Dr. Mark Gordon, Matthew Gosney & Jason Hall
View: https://www.youtube.com/watch?v=tbxPxFiOIKc

Joe Rogan Experience #700 - Dr. Mark Gordon & Andrew Marr
View: https://www.youtube.com/watch?v=RIQC3zHfVaI

Joe Rogan Experience #1056 - Dr. Mark Gordon & Andrew Marr
View: https://www.youtube.com/watch?v=9jN6eBH8CFc


Warrior Angels Foundation (TBI)
 
data-matched-content-ui-type="image_stacked" data-matched-content-rows-num="3" data-matched-content-columns-num="1" data-ad-format="autorelaxed">
Top