I want to cry!!!

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MOMOF6ANGLES
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/8/2009 1:07 PM (GMT -6)   
I went to the doctor on November 24th, which happened to be my anniversay.  My insurance had just recently changed (a job change) finally allowing me the ability to go on treatments as I could not afford them before.  My doctor's office is an hour away, and my appointment was for 3:00.  My husband and I decided that we would go to the appointment, and then go to a nice restaurant to celebrate our anniversary.  When we arrived at the office, they checked us in and didn't say anything about how their appointments were going.  Well, long story short, we ended up waiting for almost 3 hours for my appointment.  The doctor came in, gave a brief apology for running so behind, and then told me I needed a new MRI and that would determine which treatment he would put me on.  He spent maybe 5 minutes with us.  I had previously been on Avonex a few years ago, which worked great for me, so I assumed that would be my treatment.  However, he said he would need to have the MRI done first, and then we would look at treatment options.  Appointment over.  Needless to say, at that point we had been away from home for over 4 hours and needed to get back home to our kids.  We quickly went to pick up our anniversary dinner through a drive thru.  Well, I had my MRI on December 1st.  I called my doctor's office on December 8th to get the results of my MRI and find out which treatment the doctor wants to put me on.  They told me that they would pull my file and call me back.  No phone call.  I called the office again on December 19th, they put me into a voice message system.  I decided that it was Christmas and New Year's and that I needed to give them time to call me back at such a busy time of year.  I called on January 6th, the receptionist put me through to a voice message system for the nurse.  No response.  Finally yesterday my husband called to politely ask how long we would need to wait for the results, that we want to start whatever treatment asap.  Well, the receptionist said that the doctor had 30-40 patients ahead of me that he needed to call before he even gets to my file.  My husband expressed frustration about having to wait almost 3 hours for our appointment, and then having to wait so long for a return phone call.  The receptionist freaked out and started saying that 3 hours is not unusual with a specialist, that they are not a general physician's office, and that we would just need to be patient.  My husband said that it was unacceptable and asked for a phone call to be returned by the end of the evening.  Again, the receptionist was extremely rude and said that they were very busy and that she could not guarantee us a phone call back.  She said that they only return phone calls that are an emergency or that are important.  Well, we didn't get the phone call last night.  I am frustrated because we have already paid the doctor's bill, both our share and the insurance has paid their share.  I feel like calling and asking them for every cent back from that doctor's visit along with all of my records so that I can go to a new doctor.  I have been with this doctor for 12 years, and he is fabulous.  But I'd rather go to a mediocre doctor who has the time to take care of me rather than just be ignored like this.  Does anyone have any suggestions?

Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 1/8/2009 3:35 PM (GMT -6)   
Hi Momof6angles, and welcome to the board!


I’m afraid I can relate to your experience all too well. I spent a couple of months trying to get someone from my clinic to simply return my phone calls, just to help with additional authorization for a med. In order to contact my neuro’s office, you have to leave a voice mail, and cannot actually talk to a real person, unless one decides to call you back. They didn’t respond to multiple faxed requests from my pharmacy either. This is just one example, but I have had many things like this happen.

The problem with some of the neuros, especially at well-known MS Clinics, is that they are so totally overbooked. They might be wonderful doctors, but if you can’t get any response from them or their staff, and only get to see them for 5 minutes at office visits, then you might not see any benefit from their expertise anyhow. Is this the first time you've had this happen with this neuro in all the time you've been seeing him? If so, then maybe there are staffing issues or other factors involved that might get better, and it might be worth sticking around. This does not excuse what has happened (especially the rudeness of the staff, there is no reason to be rude), but a good neuro is definitely a precious thing. However, if this is how things are going to be with this neuro, maybe it is time to move on. I know from people on this board, that there are still neurologists out there, including specialists, that are not only great doctors, but are also responsive and more available to their patients. If you do decide to look for another neuro, you might contact the National MS Society to see who they can recommend to you in your area.

Sunny

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/8/2009 5:08 PM (GMT -6)   
Hey Momof6angels

Welcome to the board. I should first say WELL SAID Sunnycitrus!! I echo her thoughts on this. Sometimes an expert isn't that good for u if u can't get any time with him/her. I have a suggestion. I"ve heard from an old time ms'er more times than once, why do u need an ms specialist?? A neuro is an excellent idea given that u need to monitor things, but that doesn't mean monthly or even every six months for everyone. U"r doc can give u a better idea of that need, but once u'r ms specialist has finally given u the prescription for u'r meds, maybe it'd be a good idea to have copies of u'r records sent to u'r local gp or a neuro if u'd prefer. Someone easier to see. Unfortunately with specialists, this will happen. They are hard to see and often it takes hours in the waiting room for that very reason. It's not fair....the people they are seeing are sick and they know they are overbooking....but again, they get away with this sort of treatment. If u do follow this path....begin using a gp or local neuro...be sure to let each doc know about the other. Request that appt notes be shared and that these docs compare notes on any plans for med changes.

One last thing.... I'd be sure to call that office or hospital administrator and let them know of that receptionists rude behavior. They are NOT doing u a favor by seeing u, irregardless of what they think. It may do no good at all, but at least u'd have done all u can. That type of behavior shouldn't be allowed.

Again, welcome to the board and best wishes.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 1/8/2009 9:31 PM (GMT -6)   

Hi MOMOF6ANGELS,

Your post makes me so mad!!  What the heck are doctors thinking?!  I think you need to remind that doctor that medicine is still a consumer affair.  You have the right to move on and find a new one.  DO THAT.  You might want to follow up with this doc as you have paid your dues (literally)and get your medical records (they are yours).  Tell your soon-to-be-former-doctor doctor the reason you won't be back then start your search.  You can call the offices and ask to speak to the doctor before you make an appointment.  If they won't call you back.....move on.  You may have to ask for an in person interview.  Ask the receptionist how far ahead most appointments usually book and how long the typical wait is on appointment days. 

You have gotten excellent advice from Sunny and Rhonda.  Remember that many doctors can give you the attention and treatment you deserve and they may not be specialists.  I have had members here that are very happy just going to a PCP and getting all their MS needs met there.  If your MS is reasonably stable or very slow progressing, that may be the way to go.

I wish you the very best of luck....please post back as to how it is all going.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 1/9/2009 5:49 AM (GMT -6)   

Hi MOMOF6ANGELS

My husband and I had the same exact experience but this was all while I was waiting for my diagnosis.  Once I got the news that I had MS (yes this neuro was also highly recommended) I couldn't get any info from them.  I had to beg to get my rebif prescription.  In fact rebif bugged the office for me and got the prescription and gave me more info than I got from the doctors office.  When I was having trouble walking, I had his assistant tell me that if the doctor felt it was important they would call me back.  I never got the results of my last MRI from that office.  I called my regular doctor and they got me in within a week to someone else who is wonderful.  She reviewed all my records and their office calls me back within several hours on concerns.  You have to fight this darned disease, you shouldn't have to fight the doctors office too!  Hang in there and find someone else.  I am so sorry about your anniversary.  The good thing is it sounds like you have a wonderful husband with great support.  Keep us posted.

Cindy


jirish
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 1/9/2009 9:57 AM (GMT -6)   
I am so sorry to hear of your ordeal-neurologists are very busy-but even with that-you shouldn't have to wait for 3 hrs and you should never have to wait that long for test results or even a return phone call. Sometimes that people working in the neuro office can be really difficult and condescending. I hope you can find an answer to this problem soon-so you can get on with treatment.

MOMOF6ANGLES
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/9/2009 10:28 AM (GMT -6)   
Wow! You guys are awesome! My first thoughts when I read your responses were 1 - relief that I'm not alone, 2 - sad that I'm not alone - meaning that there are more people who can relate to this than I had thought, 3 - what a different a kind word can make, 4 - what a difference an unkind word can make. I think when we are doing our best, no matter how good or bad our best is, we feel a sense of peace and self satisfaction. I wonder if the receptionist that day was feeling frustration because of having so many patients, and I beleive she's probably used to the conversation we were having. I think of those 30-40 other people also waiting for a phone call. They said that they only return phone calls if they are important. Well, I believe we are all important - though I do believe those whose condition is more advanced should be a higher priority. No matter what though, age, gender, religion, race, we are all important. Thank you for your kind words and advice!

My doctor actually did call me last night (I guess my husband's phone call made a difference after all). He gave me my results, which were a little frustrating - plenty of new action going on there, but I'm ready to fight even harder! I will call my insurance today and start the process of getting my Avonex all lined up - which, as you all know, might be a bit of a problem as well, although this doctor has been generally good about filling prescriptions. At least now I can get on meds and maybe look at other options with my neuro. I had never even thought of going to my regular doctor to help me manage my MS, but I'm going to check into that for sure.

I am 38 years old and ran my first 5K last year. I am looking forward to getting on treatments and training for my second 5K in July. This disease may try to take over my body, but I'm not going down without a fight! Cindy is right - I do have a great husband and wonderful support from family and friends - and lucky to have great people like yourselves to build me up when I'm feeling pathetic!

Thank you everyone! Have a great weekend!

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/12/2009 11:59 AM (GMT -6)   
Momof6angels,
Boy, you sure have a LOT more Patience than I have! I would hove gone through the phone at that receptionist! That was very rude of her! May I suggest the next time you see that doctor that you ask for your records and tell him exactly why you are going to find another doctor. No one needs that kind of harrassment. That doctor may be good but he won't be in business long with that kind of service! Bu the way, MRI's only take usually less than a week to be ready for the doctor. Mine here at a certain hospital can be ready that day, if they need to be!


 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


MOMOF6ANGLES
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/12/2009 12:10 PM (GMT -6)   
You're funny, Chuck! Your post made me smile. Acutally, you're just a few hours north from my doctor in SLC. I could almost have driven to Idaho Falls and had my appointment by the time I had to wait for 3 hours for my doctor!!! :)

I wasn't feeling very patient - and I stomped around for a few days being very angry, but that did nothing to change the situation and only made my family miserable. I am going to make an appointment with my doctor and tell him what happened, and then switch, if necessary. I'll make sure to take my husband, who is better at expressing his frustrations than I am (and he even does it in a respectful way). I haven't heard of very many happy patients with the Neurologists available in my own area, but I'm definitely going to start looking!

Thanks for making me smile!

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/13/2009 12:12 PM (GMT -6)   
Momof6angels,
Who do you see in SLC, if you don't mind me asking? I have a friend that I work with that goes to Salt Lake to see someone but I am not sure who it is. I will try to find out for you and if he's not the same Neuro then I will recommend one to you. She seems happy with him but she has to drive 2 1/2 hours for her appointment. Me, I stay with a local Neuro who took his internship at Rush Prexbeterian Hospital in Chicago (Go Bears, Bulls, and White Sox!... hate the Cubbies) that's just the way Chicago people are, you're either a White Sox fan who hates the Cubs or you are a pitiful ub fan who hates the Sox. I will get back to you.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/13/2009 12:22 PM (GMT -6)   
Momof6angels,
My friend sees Dr. John Foley at the Rocky Mountain Multiple Sclerosis Clinic.

What she says about him:
Dr. Foley is God to me right now. He talked with me for over two hours, reviewed all my MRIs and previous tests and went through my complaints one by one for the past 8-10 years. He couldn’t believe that someone hadn’t picked up on MS prior to him seeing me and actually apologized for the amount of time I’d been in pain – he said everything was spelled out in my results and treatment should have been started long ago. Because I was in so much pain (nerve pain is awful) he had me do 3 days of IV Steroid infusions to try and reduce inflammation. I also take 600 mg of neurontin 3 times a day now. The steroids really helped – I can walk a lot better now and it has helped the pain in my head to where it is manageable.
 
You go girl! Let's beat this thing together!


--------------------------------------------------------------------------------


 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


MOMOF6ANGLES
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/13/2009 3:59 PM (GMT -6)   
Hmm... well, maybe her appointment was the same day as mine and maybe that's why my appointment was so late. I love Dr. Foley too, but his receptionist was very rude. It was such a frustrating experience - and unfortunately the frustrating experiences usually stand out more than the good ones. I think that I might suggest to them that if they know they are hours behind to at least give us the option of going shopping or sight seeing during that time - they could even give us a 15-30 minute heads up.

I'm glad Dr. Foley is helping your friend. I was lucky in that area, diagnosed within a week of when I first went to the doctor. I'm glad she's finally getting help and that she is feeling a bit better.

You still make me smile!

Have a great day!

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/13/2009 4:52 PM (GMT -6)   
Momof6angels,
I've heard that Dr. Rose is very good. Not trying to talk you into anything, just tossing out names to you.
I am so glad I make you smile, a smile does a lot for us with MS doesn't it? Take care and hope you have a great evening my new friend.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


MOMOF6ANGLES
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/13/2009 5:01 PM (GMT -6)   
Hi Chuck,

The tossing out of names is a great thing! I appreciate your input! My brother lived in Idaho Falls for awhile and loved it there because the people were so great! I'll look into Dr. Rose too. My friend actually goes to Dr. Foley's PA there in his office and really likes her too.

Have a great night!

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/13/2009 9:16 PM (GMT -6)   
I love the IF area. Whats nice is we live only 2 hours from Yellowstone Park. I will try to dig up some more names for you but for now I am going to bed. Hope you have a great evening and a good day tomorrow my new friend.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.

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