Receptionist just called. Being moved to another dr. NOT Dr. N.

[Guest]

We were supposed to leave Florida monday and see Dr. N tuesday but the receptionist just called and said we have to see a "Dr. Derek Chong".

 

He has good ratings online and 3 very good reviews, but I don't know anything about him. Any advice would be welcome.

 

My mom can't reschedule everything, she works full time as R.N. in busy hospital. WE have rented a loft as well.

Can't say I'm not disappointed.

 

He is board certified in neurology, psychiatry, and sleep medicine, which is GOOD. Can anyone give any advice in dealing with this situation?

 

One time I was supposed to see a top M.E./CFS specialist in Miami and we ended up seeing her partner and it was a hellish experience. The "partner" doctor didn't have much knowledge, bad bedside manner, spent thousands of dollars and couldn't help me at all!!!!!!!!!! This happened to one of my best friends b/c we went down there at the same time, and this "partner's" treatment actually made my friend permanently worse so this is the concern we are having. Is it safe to see a partner? My experience when this happened was terrible.

 

What I do like about this situation is: "1. He always returns calls/Emails promptly 2. he answers all my concerns/questions and never makes me feel "crazy" no matter how crazy they are 3. He fits me into his schedule if I need to be seen immediately 4 . He never makes me feel rushed in an appointment and will spend however much time is needed to answer all my questions 5. he asks a lot of questions and is very thorough in examining 6.

http://www.vitals.com/doctors/Dr_Derek_Chong/reviews#ixzz2klDz5dn7"

 

Also the day and time was rescheduled from afternoon which is better for me to VERY early in the morning (major sleep disorders).

 

Thanks.

 

 

[qannie47]

Hi Ophelia, I think of you often...When you say "He", do you meant the partner? If not, I too have had the misfortune of being seen by a partner of a neurologist. The original doc was Pandas friendly, so I assumed he was as well....NOT. If I were you, I suppose I would check out to make sure that this guy is going to be on the same page as you and the original doc....I used to assume that partners think alike.....they don't.

 

That being said, I wish you the best of luck!!! I hope your trip is fruitful!!!!

 

Just said a prayer for you.

[Guest]

Hi Ophelia, I think of you often...When you say "He", do you meant the partner? If not, I too have had the misfortune of being seen by a partner of a neurologist. The original doc was Pandas friendly, so I assumed he was as well....NOT. If I were you, I suppose I would check out to make sure that this guy is going to be on the same page as you and the original doc....I used to assume that partners think alike.....they don't.

 

That being said, I wish you the best of luck!!! I hope your trip is fruitful!!!!

 

Just said a prayer for you.

Thanks. Appreciate it.

 

I can't find much of anything on this guy. I can't find anything about him in connection with pandas or immune mediated psychiatric issues.

 

I agree, I saw a partner once and it was an awful experience.

 

Yes, this doctor is Najjar's partner but only been since 2012 and there is only 3 reviews online, nothing about pandas, ocd, neuroinflammation. I have nothing to go off of.

[qannie47]

Call Najjar...see what he says...

[qannie47]

Have you thought about a Lumbar Puncture....I read your history...Perhaps a bonafide autoimmune disorder?

[Guest]

Have you thought about a Lumbar Puncture....I read your history...Perhaps a bonafide autoimmune disorder?

I can't call him, nobody can. We talked to the receptionist but she doesn't have a medical degree! She said Dr. C is on the same page , but who knows!! It's really hard to even get her on the phone or to return calls; we have to leave monday. And Najjar is out of town apparently, much to our surprise.

 

I would LOVE a lumbar puncture, but nobody local will do it. I thought they would at mayo said there was no need. Dr. T didn't order one. I can't get anybody to do one and nobody here knows anything about pandas, etc. or what to look for. But yes I need one done stat!!!!!!! I saw the best rheum. locally supposedly and he was terrible he just said I had fibromyalgia and to stretch, but at that time I could barely get out of bed, rarely did for a year b/c I was so sick.

 

If I could see somebody near-by I would love too, can't find anyone. I've been to: jacksonville, pensacola, gainesville, miami, palm beach, and panama city beach. Nobody has even mentioned lumbar puncture!!!!!

 

I think the best option is to email this partner Dr. C, but haven't had success in finding email thus far.

 

Thanks for your taking the time to respond, is helpful.

Edited November 16, 2013 by Guest

[JoyBop]

I really feel for you in this situation, given the circumstances. ITs hard enough just to wait for months on end for an appointment locally, but to have this happen when you have so much invested is a big deal.

 

When you say he has always emailed you, who were you referring to? IF its Dr. N, can you get in contact with him and ask? Perhaps he isnt going to be available and didnt want you to have to cancel/loose all of your travel plans. If it were me I would call the receptionist and explain the situation very briefly and ask to speak directly with Dr. N to ask his advise. This is best accomplished if you ask to put in a message to the Dr. and have him give you a return call. If he is very familiar with your case Im sure he wouldn't refer you to someone he felt was not going to be helpful.If that didn't work, I would have your local doc call and speak with this other doc and make sure it was a good fit first.

 

I understand you can't reschedule these plans, but perhaps a plan B would be to ask Dr. N if he could see you the next day or some other time that still fits within your travel. Its very frustrating but I think if you are very patient and reasonable that you might be able to negotiate with them. However, if you go on and on about your situation and get all flustered you are likely not to get anywhere. It's a tough game to play but I wish you good luck! I personally wouldn't want to spend all that time and money on an unknown if you cant change it, but I would weigh if it were at least worth a chance to see if this other doc could help. I would put very little stock into what those reviews online say, but I have to admit, I always look myself.

 

Good luck to you!

[Guest]

Oh the "always emailed thing" was somebody else's review for Dr. Chong. Has nothing to do with me really, it's almost close to impossible to get a hold of the receptionist F. up there. I haven't spoken to Dr. Najjar ever.... My letters to Dr. N were never answered, I think he gets hundreds of thousands of them.

 

The issue is we are supposed to leave early monday morning. They called late last night (friday night) and nobody will be in the office this weekend. There is no possible way of getting ahold of any of them since nobody is in the office during weekends. And since we leave early monday.......... I have never spoken with Dr. Najjar, from what I gather he's extremely EXTREMELY busy.

 

The receptionist initially said DR. N reviewed my records and only takes on patients "he thinks he can help", BUT last night she told my mother that it was actually Dr. Chong who reviewed them. Again, wtf?

 

Presently at this moment, my mother is emailing DR. Chong - my friend did some digging and found his email.

 

Just to reiterate, I have no way of contacting the receptionist (she's stealth almost ghost like in this regards) and I've never spoken with Dr. Najjar and have no way of contacting him over the weekend, especially since he's "out of town".

 

We will email the "new" doctor and hope for a response. Other than that, I'm too fatigued to think and have no gut feeling.

[JoyBop]

Im trying to understand this situation. Who were you originally scheduled to see when you made the travel arrangements? Also, you say you rented a loft as opposed to a hotel room, so you are planning on staying a while?

You are flying out Monday morning and no one is in the office. So your choices are to A)Take your chances and go meet with this Dr. or B)Decide not to go, loose out on your travel plans and be out $$ and treatment.

If it were me, I would take my chances and go through with the appointment with the hopes that something positive would come out of the situation. If you cant get your money back on travel I would at least give it a try.

A creative plan C would be to contact Dr. T. (who seems to be everyone's savior) and see if he would take you at the last minute. His office is not far from NY if you could rent a car. ITs maybe a 45 minute drive from NYU. That way it wouldn't be a total loss. He has been known to get people in at the last minute and return those initial emails lightening fast. Or, take the appointment with Dr. Chong AND get in to see Dr. T if he could accommodate you.

This is really a tough situation and I feel for you. But if it were me, I would go and make the best of it. What do you have to loose? You have most likely already paid for the travel plans.

[Guest]

Im trying to understand this situation. Who were you originally scheduled to see when you made the travel arrangements? Also, you say you rented a loft as opposed to a hotel room, so you are planning on staying a while?

You are flying out Monday morning and no one is in the office. So your choices are to A)Take your chances and go meet with this Dr. or B)Decide not to go, loose out on your travel plans and be out $$ and treatment.

If it were me, I would take my chances and go through with the appointment with the hopes that something positive would come out of the situation. If you cant get your money back on travel I would at least give it a try.

A creative plan C would be to contact Dr. T. (who seems to be everyone's savior) and see if he would take you at the last minute. His office is not far from NY if you could rent a car. ITs maybe a 45 minute drive from NYU. That way it wouldn't be a total loss. He has been known to get people in at the last minute and return those initial emails lightening fast. Or, take the appointment with Dr. Chong AND get in to see Dr. T if he could accommodate you.

This is really a tough situation and I feel for you. But if it were me, I would go and make the best of it. What do you have to loose? You have most likely already paid for the travel plans.

We've had these plans for months (to see Dr. N on tuesday). They called last night late and said, "you can't see DR. N you're going to see DR. Chong" on tuesday. Giving us no time to do anything.

We rented a loft b/c we were told we needed to be there for a week.

 

I tried to work with Dr. T but was dropped as a patient. My calls and emails were never returned, unfortunately. But I tried every means to continue contact even faxing.

 

We've emailed both Dr. Chong and Dr. N, not sure if they check on weekends. Fingers crossed.

 

The potential issue is what happened in mayo happening again (told to be put in psych-ward and see psychiatrist and then turned away from urology dept even though had appt); I had a mental breakdown there b/c the stakes are my life and I'm running out of time health-wise. Trips make me permanently more ill, we will not have any money after this to see anyone else (very expensive and insurance not helping), and my health and mom's work will not allow for any more travels - at least any time soon.

 

We'll wait it out, see if email is returned, and see if any gut feelings bubble up. My mother feels like what has happened is really shady and that we were lied to, she has good instincts. Really wish there were doctors in jacksonville or some nearby city in florida.

 

p.s. we would lose money b/c the trip has been planned for some time

 

thanks for responses, the decision will be my mother's since it's her time and her money, she's going to think it over today and tomorrow, praying that Dr. Chong checks his email today!!

[Guest]

Planning on going. Mom said we are not leaving without the proper testing and without help. Said she won't let what happened at mayo happen again. She said she's going to fight for me up there even if that means seeing another doctor who is pandas friendly, etc.

[JoyBop]

Wishing you all the best. Im so sorry for all of your frustration. Im very inspired by your determination to get help. Don't give up! We have had the same thing happen with a neurologist that we told was very PANDAS savvy. We found out when we arrived at the hospital that the doctor our doctor had spoken to and arranged for us to see didnt even have clinic hours that day. I wasn't disastrous but it wasnt the right one either. But at the time it was all I had and was better than nothing.

Sorry about Dr. T. What about Dr. L? She is on the East Coast, even though she's not right next door.

[Guest]

Just thought I'd ask. Has anyone here who are patients of Dr. N seen Dr. Chong?

 

My mom still feels un-easy about it all. No response on emails to them both.

[PowPow]

Another forum friend who does not post often sees dr n. Does not know dr c, but said dr n's office has been nothing but professional. Only positive reports from that office.

I am sorry you have to deal with this confusion.

[T_Anna]

No. We only saw Dr.N and the PA. There is a Dr.Davinsky there who has a good reputation. If you go, just make sure you see an MD and not just the PA