Unbelieveable!

[Michellesews]

My husband had an appointment with his neurologist today...the same neurologist who told us on September 21st that he has ALS. We asked for documentation of this fact to give to the VA so we can get help with all the equipment he will need. Now suddenly he is saying it is "some kind" of Motor Neuron Disease but without a second opinion he can't be sure of ALS. We have been waiting on the VA for six months to arrange for that second opinion with their neurologist and continue to wait. Honestly, I feel like pulling every hair on my head out! He can barely get around with his walker any more and we just don't need these road blocks!

Have any of you run into this? How can a doctor tell you one thing one month and then something else the next? I'm at my wits end...and I still don't have my medication! I just don't know how much more of this either of us can take.

Michelle in Texas

 

[Atsugi]

Michelle, I'm sorry to see this is happening to your husband. As you can see, we have to work really hard to stay on top of all our providers, especially the VA. Don't let them go a day longer than you need them to.

As a veteran, he's eligible for a new program called VA Choice. Whenever the VAMC cannot give the veteran an appointment within 30 days, the veteran may call the VA Choice program at 866-606-8198. This will arrange permission for him to get a local civilian non-VA provider at VA expense.

Michelle, never ever wait for things when dealing with ALS. Call every day, visit if you must, go up the chain. But never wait.

--Mike

 

[Nuts]

You said it--unbelievable!

I wish that I had the experience here to help you out. I think I'd try calling the VA and telling them that you need a second opinion on ALS diagnosis and remind them that ALS patients are supposed to receive priority. If you have made contact with the PVA (Paralyzed Veterans of America), can your rep help speed this up? If that doesn't work, and if you have insurance, how about finding a neurologist who specializes in ALS for that second opinion. This just isn't something that can wait!

As for the doc who gave you the diagnosis and now refuses to stand behind it, how about telling him that you made financial decisions based on his diagnosis and you NEED him to put it on paper so that you can get the benefits you need. At the VERY least he should be arranging for that second opinion for you. GRRRRRR.

 

[Michellesews]

Thanks Mike. We have an appointment with the PVA tomorrow and I'm taking the script note the doctor gave us with his diagnosis of Motor Neuron Disease on it and hoping they accept it. This doctor trained in Mexico and I have a hard time understanding him a lot of the time. He did agree to contact a friend of his at the University in El Paso and see if we can get in for a second opinion. It's so darn hard to stay positive when you're running up against one brick wall after another. If they don't accept the script tomorrow...I just hope I don't lose it and show my you know what.

Meanwhile back at the ranch...I'm having to lift his legs up to each step and push his behind so he can get up them into the house. When we visit the PVA tomorrow he is going in a transfer chair. The Rollator wears him out and we have to walk a long way. Please pray we can get somewhere tomorrow! Thanks!
Michelle in Texas

 

[gooseberry]

Michelle, is your pva person at a va facility? Does your husband already have healthcare benefits? And is there a spinal cord unit at your va? I ask because.....that is our setup. If yours is the same, you might want to find out who the head of the als team is and go to the emergency room. You can ask for them and tell them your hubby has mnd. You must have his health benefits in place first.

Like Mike said, don't let a day go by, call, email, be a pain in the behind. It is the best way to move things along. With every person you talk to tell them he has mnd/als . It will move things more quickly.

 

[Michellesews]

Yes, he has benefits in place, he has a Primary Care Physician at the VA. He is already 100% disabled due to another problem. This is one reason I don't understand why we are being forced to run this obstacle course.
Michelle in Texas

 

[Nuts]

Michelle, there's NO excuse for these delays if your husband is already receiving care at the VA hospital. Tell everyone you talk to exactly what you've written here about how you get him in the house. Tell his PCP that you need equipment,NOW. Stress the danger to your husband AND to yourself. Steph is right--head to the ER and camp there. Tell them you can't get him into the house and that you've been waiting for six months for an appointment. If that doesn't do it, contact your Congressman. You don't want to have to be a pain, but this is ridiculous.

 

[LifeEnthusiast]

Hi Michelle, Hope it goes well today. I don't know anything about the VA to the US system.

I can tell you though, that I can fully relate to your experience with your doctor. My main neurologist sent me to another neurologist for a consult. The second neurologist told me one thing and told my primary neuro another. This let to massive confusion and a hosts of delays. over a year, I wanted to pull my head out and scream in frustration.

Luckily for me, my neurosurgeon sent me to the head of neurology at the hospital. The third neuro got to the bottom of everything, including the miscommunication from the second neuro. And I just gave you the simple and condensed story! lol. It doesn't make it better, but just know you're not alone in your feelings of utter frustration. It's tough.

It looks like your American comrades know the system well, know what to do, are suggesting ways to go about getting what you need. This forum is brilliant.

Let us know how today goes. Thinking of you. Cee

 

[chally]

michelle, don't wait another sec. i am a vet and recieve all the benefits, van, mod bathroom,pwc,braces ect. a long list and your husband can git these also but you must push it through the pipeline. get your PVA guy onboard NOW! you don't have time to wait. i was 100% for wounds then when i got als they doubled this so my comp went up. this should be happening for you all. don't take any no's be assertive as hell. you all desearve this. love chally

 

[Michellesews]

We met with the PVA Rep at the VA hospital today. She didn't think she could accept the prescription note on which the neurologist wrote "probable ALS". She is checking with her higher ups on it...but it was all he would give us. We desperately need that second opinion it would seem, but thanks to Obama Care the neurologists in this town have all gone out of business. The one left does not accept Medicare, which is what we have along with Tricare for Life. If I don't hear something in 3 days I'm going to have to rattle some cages. Any advice on where I should begin? This is so tiring....
Michelle in Texas

 

[gooseberry]

Steve glussman is a neuro at your va. You could secure message him. 915 564 6100 x6700 is the compensation and pension people. They are on the second floor of the hospital east hallway.

We started with the primary care who referred us to the necessary clinics and specialists

 

[gooseberry]

Patti logue is the caregiver support coordinator. She could be very helpful 915 564 6100 x6429

 

[Atsugi]

Michelle, any Dr's diagnosis of "possible ALS" or "probable ALS" is good enough to get expedited processing at the VA and at SS. You should have 100% service-connected Permanent and Total disability based on that alone. Of course, you would want a second opinion, but the first opinion of probable ALS is good enough for everything you need.

The mission of the VA is "to care for him who shall have borne the battle," not to find ways to prevent the veteran from getting care.

 

[Michellesews]

Thanks everyone! I have written a letter to my congressman and tomorrow I will follow up further. Don't worry, I won't give up. The more resistance I receive, the harder I push back.

 

[Michellesews]

If only the VA and PVA agreed with you...trudging on....