neurologist tomorrow, LP?, Insurance rant, maybe I'm weird

[RazCarver]

I go to my neurologist tomorrow. He wants me to have an LP. I have told him the last two visits that I just can’t afford tests. I do work and have insurance so I should be grateful. Yet I can’t afford to use my insurance.

This year it’s 30 % copay for office visits. I have no idea what that is going to cost because it depends on what they bill it as. Short visit or extended visit. So if I ask the things I need to, it cost me more. What should I ask about the LP?

200 copay for MRIs this year. Should be a good thing verses the 2000 deductable. If  I had 200 I would almost have enough to get the brakes and rotors for my truck that has needed it for the past year.  I don’t know what the LP will be charged as. Then there are other charges too.

My MRIs have a few 1 to 2 mm hyper intensities in the sub cortical white matter on T2 and IR sequence could be age related.  Every symptom my neuro says that’s normal for people with MS yet he can’t give me a definitive diagnosis.  I guess he wants test to back up what he thinks. I can understand that.

I have ataxic gait, forget about trying to stand with my feet together with eyes open, much less closed. Walking I can do but have to swing left leg forward and it was my good leg. Trying to touch my noise just makes me giggle, because I try and as soon as I get close my hand will tremor like crazy. Sorry but I’d rather laugh then get mad. Dr calls that anxiety.

Symptoms are affecting my ability to do my job.  I know I have a problem with my body not doing what it should. I had a vet once that didn’t do all the tests because it wouldn’t change the treatment. Wish I had a doctor like that.

All that ranting and complaining to say: I don’t know how you all get all the tests done. I don’t even know if it matters to me why any of this is happening to my body, just do something so I can keep working. Am I so weird that it doesn’t matter what it is. Maybe I am just tired of it all. Maybe my focus is all wrong. Can someone help me understand where I’m off?

[RazCarver]

Alex,  
Thanks for Telling me about Polly and all you need to do. It's amazing to me that you had trouble at a Federal building of all places. Then again maybe not so amazing when I think more about it. I'm an easy going type person but mess with someone else and I can jump to the ready in a flash. I think I would be that way with the rights of having a service dog with me.

I had a german shepherd mix and loved our nightly time of grooming. I found it relaxing for both of us. my tiny 5lb old boy is a whole different story lol. He fears baths still and I end up wetter with him then I ever did with the big dogs. then again he was almost drowned as a few week old puppy.

Maybe I should put in am application for a service dog. they can only say no you aren't handicap enough or one of our dogs wouldn't benefit you. right?

Addi,
yes I think my neuro wants the LP to backup what he seems to already have decided because of insurance maybe. . I just need to figure out how to pay for it and a way there and home. all that kind of stuff.

[addicted2harleys]

Raz- I don't think you are weird or not.  Lol. But I do GET your message loud and clear.  When I first started having symptoms I was uninsured.  When docs wanted to do any testing, the dollar signs flooded my brain.  

When someone comes down with neurological problems, the testing gets to be quite expensive.  And it is not uncommon for people to back away from the medical care that is very much needed because of the cost.  

I want to stress that I am no doctor and any information I share is my own impression and/or opinion.  That said, it looks like, to me, that your neuro sees something going on in your MRI.  IF MS is suspected, the other tests that your doc wants (like the LP) are necessary to help him make a diagnosis.   MS is diagnosed by ruling out many other things.  There isnt any one test that can be done to diagnose MS.  

I certainly understand you being tired of it all.  Many forum members have definitely felt that.  If it makes you weird, then we are all weird too.  Lol

It sounds, to me, like your neuro is trying to get you answers.  I understand about feeling that the why this is happening isn't important...just do something to make me better.  Sometimes you have to know the why before the right course of treatment can be done.  

What if everything you are experiencing is all caused by a vitamin deficiency?   That would be wonderful!   But the treatment for that is way different from the treatment of MS.  

If it is indeed MS then you want a diagnosis as quickly as you can.  While there is no cure for MS, there are different drugs that help slow down the disease and the earlier you get this started, the better it would be for you.

Anyway, welcome to our forum and I wish you good luck and maybe some answers with your neuro appointment today.  I am currently training my dog to be service certified.  :)

Addi

[HVAC]

I trained Polly myself because I was a dog trainer before I found I had MS. It took a lot of research and time to figure out what I was doing. I never thought of what having a service dog entails.

It is grooming all the time. Every time you go out. Teeth, nails, brushing. It means a lot of bathing. It means taking everything she needs when we go anywhere. So I have to allow an extra half hour to her.

She has to go in bathroom stalls, elevators, under tables in restaurants (and not touch anything), buffets are tricky. You have to not talk to and ignore people who want to meet your dog or make comments ( it happens constantly so you appear unfriendly ). If you go to a theater she has to squish under your feet. The dog basically can't stick out and be a trip hazard. If you have a short break in a meeting you may have to give up your potty break for her's. If you fly or take a train you have to make more arrangements.

People on the street let there dogs come up and get there leashes tangled up and trip you. So you not only have to look after yourself and the dog but other people who do not know how to behave around service dogs. You also have to be okay with scenes. I have been thrown off jury duty, stopped by store security, and not let into the Federal building where my Senator's office is. In all cases I have to raise a scene because it is illegal. Usually I have to call 911 and wait.

Polly is a Dalmatian. She helps me with sight, I have double vision and it is hard in a busy crowd. I also have vertigo and can't turn quickly. She helps me with balance although my balance is no quite so bad. She is taught to brace if I fall or need stability. She keeps people off me weak side and keeps them from running me over.

Yes it is a shame there are so few service dogs. You can't just train any dog. The dog has to be special. They are born with it. Polly just happens to be one of those dogs. I have two other dogs who no way could be service dogs. She had to learn basic obedience and then all the rest.

She took to it naturally. She is very out going. The cool thing about Polly is she was a throw away dog. She was born deaf. She was returned to rescue many times after being adopted because people could not communicate with her. She is very smart the humans were just not creative enough to come up with signals. Her eyesight and sense of smell are greater than other dogs and she trusts me 100%.

I hope you get a dog.

Alex

[RazCarver]

Thanks Alex.

I am just use to being a caregiver and not use to needing some help.

I have looked into Mobility Dogs. The waiting lists are long, 5 years or more. Goodwill here has started an assistance dog program and have 3 dogs in training. I know they have one person waiting who has a power chair going to college and can't use their arms either. so ya know, i think about it.

If you don't mind me asking, do you have balance issues? does your Mobility Dog really help with that? My cane helps some but its not real stable and like I said i drop it a lot. sorry but i just will not use the for legged one they want me to. it to heavy anyway. Just wondering if you don't mind sharing.

[HVAC]

Raz

I have a Mobility Dog. She has made navigating the world much easier. You have every reason to complain. If your expenses are too high for you they are too high. We all have our issues no ones are less valid.

Alex

[RazCarver]

Thank you all for sharing your experience with me.  Bob, thanks for the clear idea of cost and what tests really mean.

I guess I need to ask the neurologist what the out comes would be if I had the LP. it is positive would he then be able to diagnosis me and what difference that would mean. if the test is negative what is the difference.  

I only go to a doctor if i feel 3/4 dead or if something is interfering with my job. If they can't fix it anyway why bother. I just seem to have a delusion that maybe I could stop running onto walls. the tremors would be controlled. I could talk like i wasn't drunk when I'm not. and one day walk without my cane because I spend more time try to figure out how to pick it back up.

I admit I've also deluded myself into thinking maybe a balance dog would help in walking more normal. not like someone who is trying to do the splits and has to watch their feet all the time. and then maybe wouldn't have to go through all this alone. I know that's a fairy tale but don't we all need one?

Really reading your posts have made me grateful for what I do have. I know most folks are worse of then me and I have no reason to get down or complain.

again thank you,
Raz

[AMO]

Alex,

are you not on SSDI?
the number you post are nothing short or gouging !


the sad state of insureance and healthcare for the ill iss despicable!
I amm just signed on a new medigap program. My last insurance dropped their medicare program. I was worried, but even though it will cost more for premium, the coverage i think will be good. i pray.

Raz, my husbands group ins just went to 30/70 with larger deductable. I t is a big difference that extra 10%. He has a chronic diease and is uninsurable in perivate ins. On top of that the new c ompany customer service  agents m ust not like their jobs as they are rude rude rude!
take care, amo

[HVAC]

The insurance thing is hard. I hear you.

I have to pay $200 just to see my Neurologist for 15 minutes. The copay for a brain MRI is $1000. I pay $600 a month in premium. My deductible this year is $8,300. In July everything goes up probably to $10,000 deductible. I never reach my deductible.My LP was done in the hospital in 2009 and was $12,000 dollars, I paid $4,000. I am sure yours will be  a lot cheaper. My LP was the only way I would have been diagnosed with MS. Every test pointed to MS but they had to have a positive LP.

I need a Nuclear Stress test I am not having it. I need a spinal MRI I am not having it. I have needed knee surgery and surgery to correct deafness  for over 15 years and these are luxuries I can not afford.

I am responsible for 50-60% of all my medical bills until I reach my copay which I have never done. I am in the biggest group plan in the State, all the State workers and their families. Copays do not count. We spent a third of our income on my medical last year and I do not go to the hospital or ER or Urgent Cares and avoid Specialists. Our income is half of what it was in 1998, while the medical skyrockets.

Soon I will drop the Neurologist as a luxury. Probably this will be my last visit. What is the point if I can't have an MRI or go to PT or anything else he may suggest. My savings is gone. I refuse to dip into my retirement. I have twenty years to go and I am not sure what I will do.

I told my PCP on Monday if I was a dog it would be time for the dirt nap. Luckily she knew I was kidding. She piled me up with samples and kindly put pain patches all over my back. Telling me I need an MRI my MS is getting worse. I told her that was nice but I am still paying off the last one and will be for a year.

Alex

Alex

[COBOB]

The OC Bands test is $1200-1500. I was also charged for a clinical pathologist to read the results (Zero Bands)  And there are the other test changes.   At least the MRI can have a bearing on the diagnosis.  

A positive LP helps in the diagnosis, a neg LP doesn't mean all that much.  Same goes for a VEP.  A positive VEP is considered a demyelinating event may have occurred on the optic nerve or tract.  A negative means it healed (remyelinated) or never happened.

In my case, the Drs, MRIs, and other tests cost me out of pocket.   The MRI typically hits my deductible.  The Copaxone with Shared Commitment doesn't cost me anything.

[jensequitur]

The insurance struggle is what gets me down, not the tests.  Just the constant hassle of getting the right tests done, and then getting the insurance to pay for it.

They just came around and told us all they were letting two people go in our department.  We can take a voluntary separation, or they can just ax the people with the least tenure.  Fortunately I've been here for a while. I just can't afford to go without health insurance, and in Texas there's no other options.  Private health insurance is a big joke - they either won't take pre-existing conditions, or they want $600 a month.  

We desperately need health care reform - the bill just passed was helpful, but we need more.