Complicated delima

[gomer]

A little history;

MY MS doc sent me to urology re: for posible neurogenic bladder the same day of my first VA renal clinic. Urology was arrogant and dismissive, wast of time. (you are old and have MS).

Then in June labs for my local VA GP showed yet another decline in kidney function. Based on that, my VA GP sent me back to both renal and urology. Renal said they might check on the cause of kidney function decline when it drops to what is considered renal failure (eGFR 10-12). I question why bother with quarterly VA renal (pleasant doc) if they are not interested in WHY my kidneys are going south.

Last week I had a bad night. I could not pee, tried many times during the night, (couldn't sleep either) till my dam broke about 5am. MY civilian urologist (went to him after first VA urology clinic) left the group practice, and was unable to make contact. The urology practice could only work me in with a NP Thursday.

They did a routine PVR check, when I was told it was over 300, I could not believe my ears, I was doing much better than the bad night I had had and expected it might be higher, but not THAT HIGH.

While I was being taught on the spot to self cath I almost fainted, apparently an abrupt blood pressure drop while draining my bladder. At first they thought it was a diabetic hypo, but it was NOT like any hypo I have ever had in my diabetes decades. I tested asap and my BG was great. They had called 911 but I refused to be taken to ER.

I know I will need to update my VA MS doc on what happened. The near fainting could be MS related.

BTW it was my MS doc last year wanting to qualify me for ampyria? the walking drug and my kidney function was not good enough when he had me re-tested

Now the delima/Q.... MY MS doc at the VA also heads the UofM MS clinic. A lot of UofM docs also train at the VA.
DO I ask him about a possible referral to UofM for renal?

Gomer Sir Falls-a-lot

[Scooter24]

Have you brought all this to the attention of a patient advocate or head of specialty clinics ? patient advocats at my VA are about as usefull as a screen door in a sub, but maybe yours are better. This is also a place where your service organization handling your claim should jump in to help you, my PVA rep is always telling us how that is also part of his job and knows who to call. Your MS nuero should also assist you as your problems could easily cause you additional problems with your ms. Just sounds like to me it's time to go to the VA and stand on somebody's desk until you get the treatment you need.

[Bob698]

If there's one thing I've learned, its that Neuro's "own" the gray matter between your ears and the spongy red stuff in your spine. Outside of that, it really isn't their territory.
Your VA Neuro is also a specialist and I'm doubting he's your "team leader" at the VA. That job usually goes to a PA or a GP and it would their job to refer you to the right people.
I'm guessing that when your Neuro is working at the VA he's wearing a white VA coat and when he's working at UM he wears a blue UM coat. It might be a conflict for him to recommend UM while he's getting paid by the VA.

You could always try to play it dumb and just ask. Just be aware that it could get you in some hot water with the VA.

Personally, I would stick with the devils I know. You don't know for sure that a UM specialist/Urologist would be any better than who you're seeing now.

[gomer]

Screeen door on a sub....thanx 4 LOL

If anything the screen door at my VA is MIA!

My VA MS neuro is the one who sent me to urology re bladder issue in the first place. I think it was my VA GP that sent me to renal clinic first time.

If being sent by other VA docs to these clinics, with declining kidney function and multiple kidney risk factors is not enough, what might be?

Gomer Sir Falls-a-lot

[Scooter24]

Just be aware that it could get you in some hot water with the VA.

Bob can you explain that?

[Bob698]

Just that when you turn down or opt out of a service the VA can take that as you saying "Don't ever ask me again".
Which they won't.

I had to do some tap dancing back when they were doing my initial work-up and they wanted me to start going to rehab appointments. I called Rehab to explain that FOR NOW I could drive myself to the hospital, park as far away from the building as possible, then walk into their office. I kept stressing that FOR NOW I didn't see the need for making appointments with them but with MS you never say never and there might be a day when I would need to see them.

[gomer]

My "team leader" at the VA is my local clinic GP. She does her best. She is the one who facilitated getting the MRI and full MS workup that led to my RRMS Dx.

Now going to the PA at my VAMC, that WILL and has gotten me into hot water. black listed whatever.

Oh Bob, BTW if the neuro "owns" the gray matter and spongy red stuff in your spine, then. "WHO OWNS" the deep white matter, where I have legions of lesions.

Gomer Sir Falls-a-lot

[Scooter24]

I was scheduled 3 times with a PA, first time was ortopedic and the guy was a jerk, then they scheduled me in 2 other clinics to see the same PA, I called and said I did not want to see him and they rescheduled with a Dr, no problem at all.

[gomer]

Good for you scooter..........

In my case the arrogant-dismissive JERK is the HEAD of urology.

Gomer Sir Falls-a-lot

[Scooter24]

but he does report to someone !!

[Ga dancer]

Wow, Gomer we have a failure to communicate at your VA.

Is it possible for you to go to a private urologist for an evaluation and treatment plan, that you can fax to both your GP and the Urology Department? If they know you will be checking up on them "outside" where proper treatment is provided, they might straighten up.

I would submit the bill for your evaluation as well with the treatment plan and ask for reimbursement.

There is always your congressman if you are being mistreated. I hope someone is on the Armed Services Committee, and if not, then send a copy to McCain as well.

I am a taxpayer, and I am paying the salary for that sorry Urology Department Head at your VA and I resent that you are being given a hard time.

Ask your GP if you can be referred to another VA hospital as nearby as possible, and maybe they can give you travel pay. You need help and you are not getting your needs met.

[gomer]

GA....I am currently getting HELP outside the VA.

For now I am having to self-cath 3 times a day in addition to the usual normal voiding to counter the PVR. Sticking a longer tube up yer long tube ain't much fun, but it works!

I am already scheduled for a test early Aug, w/the urology practice my former urologist was at. He moved, called back today, almost a week later. I liked him, but If I can get him in a reasonable time frame, I don't have him. if you know what I mean.

I have not yet met who will be my new urologist, I guess it will be the one doing the testing.

Gomer Sir Falls-a-lot