Anyone been to UCLA Med Center/Michael C. Graves?

[COlisa]

Hi All,
My husband got a referral from our insurance to see neurologist named Michael C. Graves at UCLA to get another opinion on his diagnosed of PBP.

Anybody out there have any experience with UCLA neurology dept. or Dr. Graves in particular? What did you think? What "bedside manner" can we expect? Any details would be appreciated.

Thanks!
Lisa

 

[slm455]

Hi COlisa

I have been going to UCLA for almost a year now. I have PBP ALS. Dr. Graves is the one that Diagnosed me he is also the als clinic director. He seems like a nice Dr. Yet I have only seen him once. He is thorough with his exam. He usually has a student or two with him being that it is a teaching hospital. He treated me like a person not a number. I never felt rushed at my first appointment or any of my follow up ones. I see Dr. Pazos now and I like her. The speech therapist and physical therapist are nice also. Can't say much for the receptionist she's not very friendly and acts like it's just a job.
over all I would say I like it. I hope this helps.

Sabrina a.k.a slm455

 

[nspoc]

Hi Lisa -

UCLA was where my friend with ALS got her neuro work-up and official diagnosis. She was a long-time employee of the UCLA Medical Center - so was very familiar with the system. Only went to see Graves once - My friend moved in with us in Chicago the very next day and got established in clinics in Chicago.

Our experience with Dr. Graves was very kind and professional. He was thorough in the exam, treated Pat as a person not a "subject" and was encouraging, even given the ALS diagnosis. Told us about a patient who symptoms absolutely stopped. Tried to be hopeful with her, although not misleading. Very hard for me to tell you what to expect because he knew we would not be a permanent clinic patient. He was very kind, though.

My 2 cents worth - the ancillary services are more important than the neuro guy. Getting a diagnosis matters - but after that our best support has come from nurses, pulmonologist and occupational therapy. Speech therapy is also important for swallowing, as well as speech.

You have a brand new clinic in LA started at Cedars. See if you believe the services at UCLA are comprehensive and integrated - you should not have to traipse all around that complex medical center. Check out Cedars, as well. You are in the lucky position of having 2 nearby places to choose from.


The neuro matters, but cannot actually help - all of the other services are what make your life comfortable and productive.

I know LOTS about UCLA fram having worked there myself - so if you have any questions, or need advice on the system - private message me.

Good luck! Beth

 

[COlisa]

Thanks all!

We live in Colorado. My husband has PBP diagnosed right now from local neuro & also from neuro from ALS clinic. We are looking for another opinion because the 2 of them are buddies (call each other at home, etc), so I'm uncomfortable that the 2nd opinion was truly objective .

I had asked insurance to give me names of reputable expert where they would pay for another opinion, preferably not in Colorado, hence the UCLA referral & question.

We really are hoping for an MG diagnosed, since he has has had bulbar symptoms for almost 2 years, no weakness in limbs and has clean EMGs (latest one in Jan).

Thanks for feedback.

Lisa

 

[CindyM]

Good luck at your appointment, Lisa. Is it coming up soon? I am impressed at your resourcefulness at getting a second opinion out of state! Cindy

 

[COlisa]

We finally got all the paperwork, insurance, med records sorted out & Dr. Graves has agreed to see Dave. The appointment is July 5 (which is also our 22nd wedding anniversary).

Wish us luck. I really just want an objective opinion. Since PBP mimics so many other diseases, I'm hoping that other neuros just missed something, but we shall see.

Thanks to all for your support & info.
Lisa

 

[Judith]

Hi Lisa,
My symptoms started in 2004 in the bulbar region and has stayed isolated. It has not progressed to my limbs or trunk. They are fine.
I can't speak. I use a writing board. My husband and sister can make out some words if they look at my face, but no one else can. I had an EMG/NCS test at Loma Linda. My Neuro thought possible PBP. She suggested a 2nd opinion. I chose UCLA. Dr. Michael Graves did the EMG. His diagnosed was PLS. After sending his report back to my neuro, she agreed with him.
I'd be interested to know your husband's diagnosed., since his symptoms are only in the bulbar region also.
Judy

 

[Midnight]

I went to UCLA the beginning of December really hoping to just get some answers. I ended up seeing Dr. Graves (it took several months to get in) and he was courteous and fast and mostly his interns handled things. Although he was kind and simple, it did seem like he was not that thorough to me because of a couple things. First, they did EMG's on one side of my body, and not on the body parts being affected as far as I could tell. Second, I have some real clear signs of possible MG (facial asymetry,eye weakness, wobbily gate, severe fatigue upon repetition, better in the AM, many bulbar symptoms) but the intern did one repititive stim test and reviewed my bloodwork ( a negative "partial" test for MG, not complete but negative nonetheless) and they never ordererd the complete bloodwork or an x-ray of my chest, or anything. When I was positive abnormal reflex on my foot they did an EMG.They said they would need to do a single fiber EMG to see if it was MG. But since regular EMG's were clean & nerve conduction was good (I already had both previously and they were negative) they just told me that they were going to send me home and that they'd schedule me for a single fiber EMG. They never followed up and sent me on my way. So....bedside manner...they are fine, but I really felt like they kind of pigon holed me and since my nerves show strong, they thought it was probably not ALS and I think that ALS and MND are their primary focus (not that this is necessarily a bad thing), so they didn't really have any interest in following up on any other direction. I may be way off, but although I am happy to not get the ALS diagnosis, it would be nice to walk normal again and not have to go through places where there is a lot of walking in a wheelchair and be able to eat and chew without having to keep stopping to rest my jaw and tongue. I think there is something inside me that just wants a magic pill to make it all go away, but I guess if I live the rest of my life this way, I'll deal with it and be grateful for the things I can do. But, I don't think I'd personaly go back to UCLA. I had my hopes high to get answers and I got zippo =) I am so burned out of doctors and tests that I will just deal for now and if I end up not being able to breath again like a few months back, then I'll just go through the local ER. Anyway, I think everyone has a different experience, so I hope yours goes well.