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Back to square one...Starting all over again...
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lepman posted:
You wont even guess what happened now.....Let's just cut right into it., I have to go through all this bull testing and wrong diagnosis all over again...The Migraine without headache Neurologist interceeded and took over my case and has told me once again that it's a vestibular condition and told me she is going to treat it with Valium... She thinks and told me that the Valium will stop all my symptoms....Especially the tremours and dizzieness and balance problems....

I tried the medication and let me tell you, I Remember when I got wounded and had surgery, and the way I felt after, you know, doped up so much so you don't feel the pain and in that really drugged up stuper...thats how this feels...But worse, Just can't function at all..mentally or physically. So I stoped takeing the Valium and called her and I was told to just keep taking it...

I just don't agree with her to take a medicatin that dose that to a person,or what her thinking is behind that course of treatment.I just dont have any faith left in doctors any more.and I just seem to be loseing all trust in them as well.I believe I have tried all my rescources into getting help, Mayo, V.A., Local Neurologists, University Hospitals, Veterns Administration D.A.V., Seantor, Congressman,Department of Veterns Affairs, M.S. society, Even support groups for M.S. and Parkinsons, Enviromental Specialists, Movement Dissorder Specialists, Free Clinics, V.A. Commision, Even General practitioners.

This has been going on now for four years and so far I have been able to keep my sannity and good general Humor. If there is one thing that a person just can't find is REAL help When you run into a dead end like this...I have tried ton's of links from the internet but to no avail. I remember thier used to be something called A Hypacratical Oath, and when a Doctor couldn't Find the answer He or She would send or referr you to a doctor who could, instead of just telling you , Your not our patient any more and good luck. Or It's our policy not to treat Cronic Patients.

I'm tired of the Doc's telling me it's all in your head when they just won't admitt that they really don't know what the problem is.or tell you you must be willing it to happen..But you just can't be willing it to happen, if that were the case I wouldn't be going through all this just because I want to go through all the testing and run up a huge debt of medical bills.Besides I have seen and been to all the Psychiatry Doctor's who tell me that I seem to be dealing with this perty well and there is nothing wrong with me mentaly...

I'm not depressed, or stressed....Just distressed but If ya can't find the humor in it all then you lose the battle, and crying won't help....
I guess I just keep shoutting in a way, but it seems to be not doing any good. So that's all I have left , So I'll keep shoutting, Maybe someday It will pay off........
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hackwriter responded:
Lepman,

Sorry to hear it. What happened with the lead neurologist that the Environmental Disease Specialist referred you to who was going to treat you for Parkinson's? Are you saying the Migraine without headache ditz neuro hijacked your case and you are forced to see her again? I'm confused, what is this place where are you being treated and why don't you have more choices for neurologists? Has your GP run out of referral options?

Kim
 
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lepman replied to hackwriter's response:
Well your right about the Neurologist that she Hijacked my case. more like took over my case again ...why or how I don't know ... I'm not able to find out how or why,and as for the Neurologist that I was supposed to see after seeing the Enviromental Specialist, I was told that he Dosen't visit very often, So I got sent back to The Migraine with out headache Neuro.

I'm being treated At the V.A. Hospital Again....I have no choice or Options left...And as for a referral's My G.P. says I'm where I need to be...I guess I need to explain How this is going...The V.A. Hospital Dosen't have Neurologists....So They Contract Neurologists from the University Hospital to treat The Vet's...

She is from the University Hospital and Contracted By the V.A. She works both the V.A. and the University Hospital...My G.P. says his only option left is to Referr me to the University Hospital, So Getting sent there will only Get me sent back to her, Now that she is the Head Neuro ....

So yes he has run out of Referral options.And you just can't call up the the Neurologist I was supposed to see or even call for an appointment to see him, It's Hospital Policy...The way I understand it the University Neuro's are contracted by the V.A. the students or should I say residents are Staffed as the doctor upon your visits, and the the cases and findings are brought to the head Neuro who is actually a licesensed Doc.

Who makes the actual decisions of how to treat and what tests will be ferformed and So on...Even if the Head neuro is worng the student or resident, never challenges the Head Neuro. Even on my last Visit the Resident who saw me Even agreed that I should at least start a medication called Seniment...But had to Conferr with his Collegue first....Which would be the Head Neuro.

I'm not sure, but I guess residents cannot perscribe meds, not sure how that goes....and Must be one of the many ways to peotect the hospital from a lawsuit....and to protect the University Hospital also, because they are contracted by the V.A hospital...Not sure about that either, But I think it's a good guess.....

So contacting anyone at the V.A. hospital about it dose no good, you just get the runaround...And the same thing happens with the University hospital as well....Most of the time they just won't return the calls even if you do get someone to listen.....I just don't understand all the things about policy or why they can do the things they get away with and why they seem to have no one to answer to...I have tried to get answers fron even the Hospital Administrators at both Hospitals, but once again I'm not either allowed to see them or even contact them by phone or mail...

The phone calls never get to them and well...the letters,you know as well as I they get file thirteened...(throwen away)....and god forebid if you express your opinion about how you are being treated , You get a Poliece Escourt out of the Hospital...Been there...Don't want to go through that again...

I just got a gut feeling that this whole thing has turned into a personal thing with her, and she is in a position now where she knows I have no choice but to go to the V.A or the University hospital and she has both bases covered and she knows it...But why and how dose one person have so much power to get away with the way she treats people.....

Even more importantly she is teaching the residents the same practices as well...I see and hear it from other Patients at the V.A. as well...They talk with each other while waitting to be seen in the waitting room and they all have the same problems and concerns about thier treatment.....I thought I was the only one being treated that way,but I was wrong...So now I think you can get a better understanding of my position with this whole thing....
 
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hackwriter replied to lepman's response:
Lepman,

Wow, I'm speechless. Those VA contract/power play shenanigans sound positively Orwellian.

The only idea that comes to mind is finding a web forum populated by veterans who are being treated for chronic conditions. There are plenty of people out there like you with a similar story. And if you can't find one, you might consider starting one yourself, the "if you build it they will come" idea.

And if you were so motivated, you could also contact Shelly Lowe who is a patient community leader on the Medhelp MS forum to discuss your dilemma. She's a colleague of mine and I know she cares deeply about returning veterans and health care and she might know someone who is an activist for people like you. Have you visited the Medhelp MS forum yet? Lots of informative reading there about neuro issues by patients and experts alike. And have you looked at the WebMD patient forums for Parkinson's and Migraines patients as well as Healthcentral patient forums for the various neurological disorders? The more places you post your story, the greater your chances of hearing from someone who might actually have a helpful suggestion to pursue.

Whatever you do, don't give up! And please keep posting your updates, I care about what happens to you.

Kim
 
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Rory26312 responded:
Hi Lepman

First I have to start this with an apology and a thank you I should have done this on veterans day so a belated thank you for your service.

Now about that service, you have previously posted that you served in Gulf War One and Desert Shield but I see no mention of Gulf War Syndrome in your posts.

If the VA have not tested for this I would assume the are either afraid of the results or just trying to cover it up .

From what I read about it one in four of those who served have some symptoms which include neurological damage to the central nervous system.

I could be completely wrong and most likely am but it occured to me and I wanted to post anyway so it may be worth checking out if you have not done so allready .

Once again thank you for your service.

Rory.
 
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lepman replied to Rory26312's response:
Thanks for the recognition, We, my wife and I, both have suggested it,and each time we do we are told that it's not gulf war Illness.I'm not sure if they have even tested for it or what the testing entails.although there are some tests that they won't do even though we requested them, like a PET Scan and a DAT Scan but they refuse to do them and keep telling us It's not Neurological and that It's Vestibular.

I have seen the Enviromental Specialist For Gulf War Illnesses, at the V.A. Hospital, and He also believes it to be Parkinsons, and most likely lt is related in some way or manner connected to our deployment over there, and because he is not a Neurologist he is very limmited as to what he can do.Even though He has given a diagnossis of Probable Parkinsons He has to send me back to Neurology for treatment.And I believe they are the ones who have final say as for a difinative diagnossis.

But the Neuro Doc says Nope it's not that, It's Vestibuler and wants to start all the tests over agin because they believe it will show up on the M.R.I's eventualy the Neuro says.I just keep thinking to my self I'm I In the right place here, I keep going backwards here.How long will this take now that I just keep going in circles with the Doc's. I know the process of elimination all to well but if they are not open to other ways of testing or any course of treatment what do ya do.......

Thankyou again for the recogintion, but the real recognition should be to our fallen who have gave thier life's and who will in my heart and mind always be remembered......


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