Now What?

[meikela]

So, it started with my mom's right hand, a month later moved to her left. We've spent over a year at the neurologist's office having test after test and he "thinks" it may be ALS but it probably isn't, he just isn't sure. Last week she developed aspiration pneumonia, this week they put in a PEG.

I'm the primary caretaker and she's been transferred from the hospital to a sub-acute care facility for additional treatment of the pneumonia and PT, OT, and speech therapy. We haven't even had a final diagnosis yet and it all seems to be happening so fast!

The biggest problem is that mom is in complete denial. The doctor's are wrong, everyone is wrong and this is all due to something else. I'm not sure what to think at this point.

I'm exhausted, worried, and scared. Any suggestions on what we should be doing at this point? I feel like even though the neurologist isn't sure, the docs at the hospital are going with the diagnosis and have set this ball in motion. They even had a psychiatrist come in and tell her that ALS was a crappy diagnosis and she should make plans to do what she wants to do now because who knows how long she has!

I guess I'm overwhelmed and am not having much luck with the medical community at this point. Can anyone give some advice or provide a referral for ALS specialists in Southern California?

Sorry, hope I have the right forum - I'm a first time poster and sleep deprived, so God only knows if I'm in the right spot!

 

[BethU]

You're in the right place. I'm sorry you have to be here, and so sorry about your mom, but glad you found us.

I understand that the best ALS clinics in So. Cal. are UCLA, UC Irvine, and Cedars Sinai. You have to get refered into UCLA. I started out at UC Irvine, as I had a diagnosed of MG and UC Irvine has a free MG clinic, but Irvine said it was ALS and referred me to UCLA. (I live in the Valley, so the trip to Irvine was a long haul, which is why I didn't continue on there.)

The good thing about UCLA is that they are affiliated with MDA (Muscular Dystrophy Assoc.) and MDA pays for everything, but you need a definite diagnosed to get help from MDA.. If your insurance will pay for UCLA, see if you can get a consultation there. You mom will need a referral, but your neuro should be able to provide one. UCLA only sees ALS patients on Thursdays.

I understand Cedars has a terrific program, too, and also that they are very responsive and easy to schedule appts with. Much easier to deal with than UCLA. So a consultation at either one might be a good idea. I'm going blank on my geography right now, and can't remember where Ontario is exactly ... if Irvine is closer, they're great, too.

Good luck!