ALS clinic? Help!

[Kathylund]

Hi everyone, I had posted a couple of weeks ago concerning our neighbor/friend, my husband has been bringing him to his appointments and I had gotten some misinformation, I apologize for that, but I have the whole story now, so hoping for some insight here.

He was seeing his first neuro, who took a loa, never did a emg or gave him a diagnosis

second neuro, who took over first neuro's patients, did emg, exam, and said that indeed it was als, but could not treat him further or give him paper diagnosis because he is still a patient of first neuro (said he did not want to spep on his toes)

tried to make a app with als clinic in our state and they said they could not see him without referal

found a primary care, who made a referal to another neuro (not als specialist) but also said she believes it to be als (he can't get into this neuro until late aug)

I call the als clinic again pretty much begging for a app for him, they said no referal, he can't be seen

I call his new primary care 3x, for them to send over referal to als clinic, and still nothing, no referal there as of yet

So whats the trick? How can he get a app? He can barely make it up the stairs to his room, lives with his brothers who are really no help. Has so much trouble speaking he can't make his own calls, and now has trouble swallowing. I don't get it!

I feel so helpless, we do what we can, but he needs help. He really needs to go to a assited living soon, I don't understand the need for a referal? He is on medicaid, and clinic said they would get him in asap, with referal.

What do I do?
Thanks wonderful people!

 

[CathyP]

I am so sorry to hear this.
I have been having trouble myself trying to start going to the ALS clinic where I was first diagnosed in Jan 2012. They say I waited to long to come and would have to be seen again by same Dr I saw in Jan that runs the clinic and get referral from him....his first available appt is Dec 26....how stupid is that?
The first neuro that took loa...is that office still open? If it is can he/you tell them he wants to not be a patient anymore and he need his medical records? Then go to second neuro that doesn't want to step on toes and show that he is not patient of first neuro anymore so no toes to hurt? Actually going to neuro office might make a difference instead of calling. Try going to primary care doctor as well instead of calling. I don't see how it would hurt.
Also, has he/you signed up at your local ALS? Signed up at your local MDA? Maybe either one of those organizations can suggest something.
Keep us posted

 

[Kathylund]

First neuro is not around nor will return calls, second neuro won't help, says not his patient, and new neuro won't get him in until aug. makes mo sense! Primary care has still not sent o er referral! I thought a certified ALS center would see a patient regardless of referral?

 

[HelenL]

Call your local MDA or ALSA office and get their help for a referral...

The clinics probably have to be a bit hard-nosed because of all the DIY lunatics out there wasting their time. But maybe if you showed up on clinic day it might help a bit?

 

[brooksea]

As CathyP suggested, try calling the local ALSA and ask to speak to the patient rep. Explain the predicament and maybe see if they have any ideas. They might be able to help y'all out.

That second neuro is an idiot! Hasn't he ever heard of a second opinion? We are talking about a man's very short life here! I would point that out, too!

 

[HelenL]

Or go to a larger city for your neuro... how far are you from Boston? Go to Mass General, Beth israel or Lahey Clinic in Burlington, or UMass in Worcester.

 

[notme]

Personally, I'd suggest he go to an ER to get the ball rolling. In the meantime, contact ALSA and see if they can help--or the MDA. It sounds like he seriously needs help -- with bulbar issues--breathing can become an issue pretty quickly.

Does he have disability? If so, there are a list of doctors on the ALSA place to check with that specialize in ALS

 

[Katie C]

In the meantime... I would drop into conversation that you are thinking about contacting the local licensing board about the behavior of the two neurologists. They are deliberately making decisions that interfere with proper patient care. More than once I found doors opened QUICKLY after I mentioned I was about to contact their superiors.

 

[sadiemae]

I agree with ER. He has to get a d x to get him on medicare. The medicare will mostlikely be retroactove so the hospital will get paid. This is how my husband got his D x.