clinically probable MS

[Ufrustrated2]

a few months ago, my local VA neuro stated(wrote) "clinically probable MS with normal IgG  (abnormal OCB)."

ok, doc, you are ever the so cautious one, you have stepped out on a limb twice now with me. you're actually taking note of my symptom complaints.   i do appreciate it. really doc, i'm not a difficult guy.

beats me why you don't mention the dawson finger images in the same sentence as the abnormal OCB, the 23 years of documented exacerbations, the 3 previous positive OCP LPs, the neuro issues in the navy, but i somewhat get it.  VA protocol i guess. that to is just part of me wanting a little vindication to years of symptoms gone mis-diagnosed.

i know quite a few MS folks who don't have the amount of positive data i do and they have diagnosis, but then they don't go to the VA. rules and protocols there [are] different, to say the least.

we're getting there doc, we're getting there. and you have no idea how that helps my mojo/psychy (self-esteem). i hope we get there before i'm too old to enjoy it.

all things considered, that is a quantum leap compared to what the VA has listed me as having in the past.

[Ufrustrated2]

without a doubt start making copies of all your mil med records, make two, and keep them in separate places just in case. in today's mil they probably can put all that on a DVD for you. way better than all that paperwork to file away. you can get your films/images on it too.

even with the paperwork the VA can sweep you under the carpet so to speak, but without it, it could prove to be very difficult.

good luck and welcome ...

[WarriorMomma]

So sorry to hear about your struggles with the VA. That irritates and scares me.

I am currently in the reserves after seven years of active duty.

Reading this has made me UNDERSTAND how serious it is that I take all of my paperwork to the VA ASAP. Undergoing many neurological issues after TIA in 2008 (while active duty). Didn't turn in my medical documents cause I didn't want the miltiary to kick me out.

However, reading this makes me realize that it is a very LONG process that must be started while on active duty.

[Ufrustrated2]

ok, thanks for the clarification.  my irritable bluntness stands corrected.

i'm a bit protective of veterans needing help versus the VA's monetary excuses we all have heard about way too many times.

you have been tossed into the "VA black-hole" too, as i like to call it. we are just two of thousands that the VA "chooses" to ignore symptoms in order to deny diagnosis.

although they are slowly seeing my illnesses for what they are, which i'm very happy about.

you know about the 7 year wait period after discharge, yes?  then you also have known a veteran who was diagnosed just after the 7 year wait period thus dis-qualifing them from SC disability. many don't think that is a co-incidence.

good-luck with your continued fight

[Sailorsong]

I was not saying that Vets with chornic illnesses do not need or deserve that monthly check. My previous post was about why we have a battle to get MS as a Dx and was meant to clarify for the others on the board.

It is the cost containment issue as to why I am still listed as having a "movement disorder" Dx and completly ignoring all of the other Sx I have by the Neuros at the VA. I see this also with my PTSD. I did have one shrink at the VA confirm that I have PTSD but then they started saying that I have cognitive problems due to my health and therefore don't have PTSD.

Dennis

[Ufrustrated2]

i'm all too familiar with the reason(s) many veterans including the Agent Orange periods, my vet status Lebanon Era June 1, 1983, to December 1, 1987, and the Gulf War veterans with an unusually high incidence of demyelinating diseases/neurological issues, many MS.

so, i don't know what the point is, sorry if i sound blunt but i gotta say, SO? do you or other veterans with chronic SC illness not deserve/need that monthly check?

Lu, there are thousands of veterans caught in the cost containment problem. and more on the way from OEF/OIF and Afghanistan.

[Lulu54]

I don't remember the number, but I recently read an outlandishly large number of vets with MS   - there seems to be a real problem.  You two vets seems to be caught in the fallout of cost containment.  I'm just hoping I am around to celebrate when you finally get your dx.  

be well, Lu

[Sailorsong]

Several months ago while going through my medical records at the VA I found that my Neuro there had stated that Iprobably had RRMS which had advonced to SPMS.

So maybe I can clarify things about the VA.

A couple of months ago while in the Patient Advocacy office I saw a notice on their bulitin board. It stated that service personal from the Veitnam era that are diagnosed with MS would be presumed to have been exposed to Agent Orange. At least in my case if they give me an MS Dx that would mean I would get 100% service connection for all my medical problems due to the fact they would then need to presume I had been exposed to Agent Orange. Exposure to Agent Orange is automatic 100% service connection.

The end result would be that they would cover all of my doctor & Rx expenses 100%, I would get travel pay for every trip to the VA ( $62), and I would get $2,673 per month in disabilty compensation.

As you can imagine that would result in a lot of money the VA would have to pay out for each service member that got an MS Dx.

Dennis

[HVAC]

I am sorry for your frustration. Red tape is never fun. I worked for Tricare when the Military started it. I learned all about red tape then. I had manuals the size of phone books and they were amended daily.

Alex



I

[Ufrustrated2]

by law the VA has to treat symptoms, though not diagnose. yes, they treat my symptoms and gave me copaxone after the civilian neuros assessed me with rrMS...but they had discussed that before. though at that time they were on the adem and cis kick. for some reason they didn't want to look at my navy med records which would have blown the adem and cis theory out of the water...IMHO

tonya, as far as the protocol, i simply meant the VA has its agenda for veterans versus the civilian world, not the MS protocol.

although, the VA can dance the MS protocol anyway they want to fit any particular need. and there are disability issues/status for veterans and whether injuries are service connected or non-service connected. a whole nother criteria than what you find yourself being scrutinized by your civilian doctor.

if you want you can back through some of my old posts and see a better picture of the whole process. too long for me to go into again.

yeah, Alex, many strange processes for many of us, especially via the VA.

i kinda wrote my post to my neuro as a self help function. he doesn't read this list i just wrote it to help me a little.

[HVAC]

Yes you have a right to be frustrated. It only took me from the Mayo Clinic  visit in 1967 until 2009 to get a positive MS diagnosis. All the way through Doctors seeing Neurological stuff.

When the Neurologists saw I had dawson's fingers they all said probable MS but that I would have an MS diagnosis for sure down the road.

This is the strangest diagnosing process. Sometimes it seems there is no rhyme or reason. But then again this is one of the more baffling diseases.

Are your symptoms being treated at all? If you do not have a diagnosis at least treating symptoms is important.

Alex

[tonyad]

   Hey there :)

      Why would the VA have a different Protocol?  I mean as far as I know, everyone "Should" be using the same Protocol.  Now obviously they don't. i mean we have the Lesion Counters (depite posisitive everything else), then you have the LP diagnoser (sp).....

     Perhaps you should go in there armed w/ your ammunition of the "Real Protocol" and show it to them.  I know, easier said than done, right?   I would however go to the "Health Pages" and print off the Protocol for dx'ing MS.  Can't hurt, Might help!

Take Care,
~Tonya