Good news!

[Michellesews]

We received a call from the VA yesterday that we are to see the Neurosugeon there today at 11:00! Wow... Maybe my letter to my congressman helped...or maybe coincidence...but FINALLY we can get the second opinion. Of course I'd be lying if I said I wasn't hoping for this doc to say the first doc made a mistake...but I'm prepared this time for whatever the result turns out be. Maybe we can at least move forward now. Thanks for everyone's support these last weeks here. It helps to know you have friends behind you who understand.
Michelle in Texas

 

[Atsugi]

Let us know how it goes.

 

[gooseberry]

Good luck! Hope you like the doctor.

 

[anderkling]

At least the waiting is over, Michelle. Please post when you have new information.
Charlene

 

[LifeEnthusiast]

Thinking of you and sending positive thoughts. ��

 

[Nuts]

Glad that things are finally moving along. I wonder why a neurosurgeon, rather than neurologist, but hopefully you'll get what you need. Let us know!

 

[Michellesews]

Well this appointment was a BUST! NONE of the paperwork faxed from the first neurologist made it to the appointment. They called medical records at the VA and duh.... They didn't have anything! They called the other neuro to fax it directly to them but by now it's 11:45 and everyone is running for the door to go to lunch. The doctor was stomping around, angry and I started to cry. My husband is just sitting there quietly in his wheelchair. I guess the doc felt bad when I started blubbering because then he came over and looked at a couple of things. He had my husband stick out his tongue and pronounced that yes, this did look like the tongue of an ALS patient. I tried to explain to him why we need this second diagnosis but it was as if he couldn't hear me. He said, "well if he has ALS there's nothing anyone can do anyway". Again I tried to explain about my husband getting into the house, up the steps, that to get help from the VA we needed his diagnosis. I don't know how I could have made myself clearer but by now I was at my hair-tearing stage again. It all ended with, "I'll call you once I see the paperwork from the other neurologist and we will have you come back". Oh my, Im just SO looking forward to that! I feel like I'm drowning and nobody will help me....
Michelle

 

[LifeEnthusiast]

Oh Michelle, I am so sorry you and your husband had to go through all this nonsense. I've had a similar experience and can relate to the frustration and despair when others don't do their jobs by sending paperwork etc., Yet we do our job by showing up on time only to be flubbed off.

Admittedly, I don't understand the American system or how the VA works, but from where I sit it seems utterly ridiculous and cruel for your husband to not be getting the help that he needs. I hope they act pronto in getting the paperwork and another appointment.

Throwing you a lifejacket of hugs.

Cee x

 

[Michellesews]

Thanks Cee....along with that life jacket, could you add a raft? We're both sinking...lol. Surely do appreciate the hugs most of all

 

[LifeEnthusiast]

I'm wondering if a relative or friend could contact a news station. Maybe a bit up public strong-arming would help? How I wish I had a raft to gift to you both. I wish even more I had an immediately solution. xx

 

[gooseberry]

Va secretary cell 513 509 845r and email robert dot a dot mcdonald at va dot gov

He wants to know when there are problems I would call him

 

[Michellesews]

I wrote him a letter. Thanks for the information!

Michelle

 

[Atsugi]

Just a note of encouragement: While local policies might be restrictive and change from location to location for a lot of reasons, the law and VA regulations are not restrictive at all--they can do "whatever it takes" to improve the veteran's quality of life.

 

[gooseberry]

Good job Michelle! I have learned to not be shy....if I ever was.....to get what Steve needs. Sometimes you have to scream from the top of the tallest building to be heard but we do it.

 

[scaredwifetx]

I agree. we do need to scream to be heard. I am no longer shy about what Steve needs and am so tired of all the mistakes. missing paperwork and hold ups. I will take my lunch hours each day and call them to get our approvals and they will be so tired of hearing my sobbing and ranting that eventually we will get our approvals. I often think we ae having the worst luck ever but reading these posts make me realize just how much our medical system is messed up at times. We need to stay strong and someone will listen eventually. I hope things smooth out a little for you Michelle and soon.