mild rant:: VA neuro follow appt today

[Ufrustrated2]

i hate to put this out here but i will anyway because most of my writings here are for a journal like thing for others to follow and so there will be a historical record, at least from my perspecitve.

local VA neuro in Jan 2010 wrote in notes about having another set of MRIs (brain & neck) soon. in March 2010, i saw a neuro-surgeon and he wrote he couldn't be sure my upper right quadrant/arm pain(like internal shingles) was being caused by the "C-sec severe disk disease, C-sec HNP, canal narrowing, multilevel neural foraminal stenosis, etc., or MS. and he said the risks for MS flare during surgery outweighed the benefits.

so after that appt, i wrote my local neuro i would like a new set of MRIs to see what really is going in the neck that no one will do surgery due to MS flare risks.

never heard back and no new MRIs ordered.

so i go see my non-VA neuro and tell him about it and he orders new MRIs of brain & neck with (3T with MS protocol).

results come back with a new item, "hyperintense signal within the spinal cord at the C4 level is consistent with the clinical history of demyelinating disease", that wasn't conspicuous on Aug 2009 MRIs. (2009 neck MRIs didn't use the MS protocol though)

so i show this to my local VA neuro today. he kinda, and this is from my perspective, dismisses it, as maybe 3T machine was too strong, maybe you moved, blah blah ... not his exact words but you get the picture. and handed the reports back to me. some VA doctors will get such things in your records. not here. gotta do it yourself.

after a few years of hearing about time and space and that is why they can't diagnosis anything, etc, i thought he would medically appreciate the info. f!@# it didn't cost the VA anything, i paid for it. and why not, even the non-VA neuro said it was time to get new images anyway since i had been on copaxone for almost 6 months along with the neck issues. he said people with MS have surgery all the time, that must be some other reason the VA didn't want to do surgery.

i always leave this VA neuro shaking my head when i get home when things start to sink in and i end up with more questions than answers. that doesn't happen much from the non-VA doctors.

[Ufrustrated2]

you do know that i do not hold ALL VAs & their personnel in a negative space don't you? i have no vendetta or the like.

it's simple really in my case...i was mis-labeled, mis-diagnosed years ago and no one wanted to be the one to open that box up. so who takes a beating for that? you know my story, its all here for all to see. its just that simple.

all i'm doing now, is getting the gears back on the correct track and that my friend is one uphill fight & struggle.

[Ufrustrated2]

>>What the problem is Bureaucracy rules over common sense. This is what I write about in my Health care reform blog. A lot of times the bureaucracy does not save time or money in long run either.

great commentary.


>>Because of my father the Chaplain I spent a lot of time volunteering in different VA hospitals.

i might volunteer again. used to do that. another VA in another city at their spinal/MS clinic has mentioned in passing, "you could help some veterans here".  we'll see

enjoy your insight and your empathy for others on this forum. i feel better getting a few things off my chest. my perspective can easily become cloudy due to anger and worn out mental tapes playing. just the way it is for now.

[HVAC]

The only difference is I am not a Veteran I am dealing with all Civilian Doctors. I have been through some stupid health care. What the problem is Bureaucracy rules over common sense. This is what I write about in my Health care reform blog. A lot of times the bureaucracy does not save time or money in long run either.

I have dealt with the Mental Health System when this country had one years ago . I had over fifty Psychiatrists. I would be given 25 days worth of medication to last a month. I would rush from work to find my Social Worker forgot our appointment and went home. Finally I was compliant and did all I was supposed to and they kicked me out because they said if you can take your medication like you are supposed to, do not get mad at us, and keep your appointments you are "to sane" to be treated by mental health.  I swore off all Psychiatrists forever.

I finally found a great Psychiatrist well he kinda found me. He heard about me and was amazed with all I had been through in my life I still kept it together. He is not on my insurance. I pay him cash and it is so worth it. He sees me for over an hour if needed. We have a once a week call in check in. I can call him anytime and I get him if he is available not a nurse or secretary. He is available even when he is out of the country. He now manages my MS drugs since my Neurologist won't. He knew I had a Neurological problem looking at my MRI. He even realized my "Mental Health Issues" were a life time of MS. He knows I will not waste his time.

I grew up with the military Health care system which I can't complain about. I had an Army Doctor just back from Viet Nam Reconstruct my whole face when I was six. The Military Doctors also caught the Neurological problems in childhood.

I worked for Tricare when it started the HMO for Military Families. It might be nice to think the VA should be an insurance program and Veterans can choose the providers. That seems cool but it is a low bid private insurance company running the show. We denied every claim three times hoping Military Families would give up. We had a rules manual the size of two Telephone books. The claim would be paid on the forth go round but that ment countless hours on the phone for the Service Member or there family.

I also spent many years working in veterinary medicine and I saw how it works so much more smoothly. I can get an appointment with my Veterinarian more quickly, if my pet needs surgery or tests it happens in hours or days not weeks or months for the same procedures I need. Because there is no insurance or litigation the fees are less for the same tests or surgery. They use the same labs and the blood work is cheaper.
Most Veterinarians do not Specailize and they are trained to deal with so many things they diagnose and treat much more quickly and there patients can't tell them what is going on not in words. When I got a kidney stone the Vet I worked for and I both knew right away. He said if you were a dog I would do surgery today. It took Duke ten Doctors and 4 months and I ended up having Emergency Surgery in the end. I walked around with an almond size stone in my Ureter for four months as the ball got dropped in a story that was a sick comedy.

I am not a Veteran but I am working on advocating for all of us in the Health care system. How far would I go for a Veteran? My husband and I took in a Gulf War Veteran we barely knew when she was dying of Stomach Cancer because she did not want to be in the hospital and she was not ready to call on hospice.

Because of my father the Chaplain I spent a lot of time volunteering in different VA hospitals.

Alex

[Ufrustrated2]

>>It is what it is.

i'm realizing and accepting this more and more. i'm about ready to call it quits at the VA and just stick with non-VA doctors. its just a circle jerk wasting everyone's time and dignity.

sugar & spice, i've tried it both ways there. sugar: they took advantage of it. spice: they want you to go to mental health.

i wonder if any of these doctors would enjoy meeting themselves for medical dx and treatment if they were in our shoes.

looks like we have much in common with our journey through neuros and getting a (proper) dx and treatment.

it is what is ?? and what is that? there must be a colorful descriptive word for it.

[HVAC]

My experience with Neurologists has been bad and I do not go to the VA. My first Neurologist saw me once knowing he was taking another job he told me I had one of two things which would kill me and neither could be fixed but he wanted an MRI to find out which. He then told me he thought I had MS over the phone and said to come get my records he was closing his office.

The Neurologist he sent me to would not look at the MRI films or report. She did further MS testing which came back abnormal and still said no MS. I finally asked her about it and she walked out threw my record at her receptionist and never made another appointment.

The next Neurologist put her hand in my face every time I went to talk. I said okay I guess I do not have follow up on this. She said this is serious you can't ignore this will have MS in the future.

The next guy dismissed me first appointment, looked at same MRI six months later said it was definitley MS. Two years and a half a dozen Neurologists later I was told I had MS but the Neurologist was only going to watch my progression not treat symptoms until I am in a wheel chair.

I have a new MS Specialist I pay $120 copay I have an average two hour wait I see him 15 minutes every six months and I am allowed to bring up one concern only which he does nothing about just notes it in my record. This was true even of my first meeting. I go to my other Doctors to treat my MS.

I have the notes from these Doctors over the years and they are unbelievable. My PCP started me going to the Neurologists when she found the MS on an exam in 2007. She wonders now if she did the right thing sending me to these Specialists in the first place.

We do not have many Neurologists who deal with MS where I live even with Duke and UNC, may be five. I have the best doctor around but because he has thousands of MS patients alone I can not expect much. The reason I chose him was he was a Navy Neurologist.

It is what it is.

Alex