Dealing with doctors who don't "get it"

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Andrea11
Regular Member


Date Joined May 2011
Total Posts : 104
   Posted 6/29/2011 5:12 AM (GMT -6)   
I had a very disappointing appointment with a specialist (a neuro) recently who asked me almost nothing about my symptoms, subjected me to about 20 seconds (and that's not an exagerration)  of physical testing and did not test my trigger points, did not order any tests, and despite my assertion that I am not, basically summarily concluded I am just suffering from depression. As I explained to him, I'm not depressed - I know depression and would have no problem seeking treatment for it if I was depressed, but that's not what's going on with me now. 
 
 
It was one of the most frustrating moments of my life as I am constantly in pain, exhausted, etc. but rarely go to doctors because I am too busy. It had finally gotten to the point that I just had to and then I wasted my time on this doctor.  He also said that he did not concur in another doctor's (a rheumatologist's) diagnosis of fibro but gave me no explanation as to why his opinion differed and what objective reasoning he used to come to it.  He prescribed something and said he wanted to see me back in a month. 
 
 
How have you dealt with not-so-helpful doctors? Do you simply fire them and move on to the next one and hope you get one who is familiar with this condition and treating fibro patients, or do you go ahead and follow whatever protocol the doctor prescribes to see if that works before starting at square one again?
 
 

AustenFan
Veteran Member


Date Joined Aug 2008
Total Posts : 1605
   Posted 6/29/2011 8:15 AM (GMT -6)   
I had a neurologist who diagnosed me with just anxiety when, in reality, I was suffering from Meniere's disease - an inner ear disorder. I was experiencing anxiety, too, but it was a result of the Meniere,s, not the primary problem. As a result, I was treated improperly (anti-depressants aggravated my inner ear problem), and treatment was delayed for the Meniere's.

This particular doctor didn't LISTEN to me, and as a result, I was misdiagnosed. I finally made my way to an ENT at a large university hospital who treated me for both the anxiety and the root cause, the Meniere's. Having a correct diagnosis not only got me proper treatment, but just knowing what was wrong, having someone actually listen to me, and getting a diagnosis that explained my symptoms really helped me cope with all of it.

I had to go through several doctors until I found this one, but it was definitely worth it. If you feel that your diagnosis is incorrect, and if this doc didn't listen to you (it is your body, after all), I would encourage you to keep trying. It's frustrating, time consuming and expensive, but worth it in my opinion.

To answer your question, if it's a doctor I trust, and the diagnosis doesn't seem quite right but isn't totally off the mark, I may try it intitially and see if it helps. My primary doc has told me a few times, I'm not sure what it is, but we can try this first (before expensive tests) & see if it helps. On the other hand, if I'm seeing a new specialist, and his diagnosis is way off base, I fire him immediately and seek treatment elsewhere, especially if he doesn't listen to me or patronizes me.

Good luck with your decision.

Austen

Irish Babe
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Date Joined May 2007
Total Posts : 1342
   Posted 6/29/2011 8:59 AM (GMT -6)   
Yeah, I don't know what it is w/ neurologists. I went to one last June, had to wait forever for the appt and I was so hopeful. He started off the visit by telling me he did not believe in Fibro. One of the few tests he did was break a toothpick in half and proceed to stab me in different parts of my body. He stabbed me in the back of my left leg and no reaction, so he did it again, and no reaction. I asked him what that meant. He told me 'Nothing, you saw it coming and braced for it'. I saw all of them coming and reacted to all of them plus his finger jabbing.
 
The reason for the visit was to due to numbness in my left leg. My pcp recommended this jerk. He wanted me to go for blood work and come back in six wks. I just had blood work for the pcp and asked if he would get results from her. He said 'NO, I want my own tests!' Well, he got neither the blood tests or the pleasure of my company and co pay.
 
Yes, I know they are the drs, but I am the one living in my body and I know what I feel or don't feel - as the case may be. I don't like talking to drs who choose not to listen to me, because their minds are already made up. I can not stand to be patronized.
 
If you're not comfortable w/ his treatment, move on to someone who listens to you.  Good luck.
 
God bless.  Alice.

Fantod
Regular Member


Date Joined Jun 2011
Total Posts : 33
   Posted 6/29/2011 9:59 AM (GMT -6)   
There are still a lot of physicians out there who either do not believe in Fibromyalgia or don't want to treat patients that have it. They should be fired. But, you also need to follow up with a letter to your insurance company with an objective complaint about how you were treated.

If you want to locate a fibro-friendly doctor, go to the National Fibromyalgia Association website. There is a list of providers for each state. Take care.

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 6/29/2011 10:18 AM (GMT -6)   
He sounds like a pompous jerk who made up his mind before he even saw you. I have fired doctors before and been fired by them by insisting on decent care, response to problems etc. I write letters to hospital, if they are affiliated with one...

I'd tell my PCP you want another referral. My doc is really good about that. It is so frustrating to wait and wait and come out with nothing.

Good luck

Maggie

Snue
Regular Member


Date Joined Feb 2005
Total Posts : 188
   Posted 6/29/2011 12:09 PM (GMT -6)   
I would say if you do not feel comfortable with the doctor and don't feel like he really listened to your symptoms, I would not take his medication.
I have left doctors when I feel they are not listening to me, don't believe in fibro, or jump to conclusions like I need counseling instead of that it is something physical.
You have to be comfortable with the doctor you go to.  You are trusting them by taking their recommendations.  You are putting your life in their hands.
Patient Power!!!  Fire the Bad, Pomous Doctors!!!!
~~Susan~~
Dx 2002 Fibromyalgia
Also have RLS, UARS (like sleep apnea), hypoglycemia and arthritis (neck and knees).
Trying to stay positive and live one day at a time.

FM Sufferer
Regular Member


Date Joined Jun 2011
Total Posts : 66
   Posted 6/29/2011 4:10 PM (GMT -6)   
Hi Austenfan; what do u do 4 ur Meniere's Disease? I have it also.

BeachGirl808
Regular Member


Date Joined Mar 2010
Total Posts : 217
   Posted 6/29/2011 4:51 PM (GMT -6)   
Just to add to this on the Doctors point of view. I don't think it's that they "don't believe in Fibro." It's more that there are many patients that have no easily recognizable disease or problem. However, many of these patients insist on a diagnosis, even though there may not currently be one. So when a Dr finally says, you have this disease, it may just be a way to keep you happy. So, in many Doctors minds, a Fibro patient is just a "complainer."

My advice is this: If you are having symptoms other than what typically goes along with Fibro, try and isolate it. Instead of just saying, I have Fibro and am also having this symptom - leave out the Fibro. You should always try and find Drs. who treat Fibro, but if you get referred to a specialist for something, you may want to try this.

Hope you are able to find a good Dr in your area!
Taking 2 Lialda and Canasa 1x daily.

Protonix, 50 mg Synthroid, Migraine meds when needed

Also taking Probiotics and Fish oil supplements

Andrea11
Regular Member


Date Joined May 2011
Total Posts : 104
   Posted 7/2/2011 11:22 AM (GMT -6)   
Thanks for all the helpful comments and advice. BeachGirl808, I believe I intentionally did not bring up fibro to see what his independent conclusion would be based on my symptoms. Unfortunately he never really asked me what my symptoms were other than those associated with my headaches. But I did bring a recent MRI with me which indicated herniations and he still said I just had depression!!!! How, as a neurologist, do you look at a recent MRI which shows herniations and have someone in front of you who has headaches, pain in both arms/the neck/the shoulders/back, etc., chronic fatigue, and conclude they just have depression? Especially when they are an educated professional and they are telling you they are not, in fact, depressed?!

Thanks for the affirmation - I will be moving on to find another doctor! Just so frustrated with this process. :(

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 15372
   Posted 7/2/2011 11:32 AM (GMT -6)   
I don't deal with doctors like that.  I do fire them and find doctors that will work with me.  You need a doctor that you can have a good rapport with and work together.  No one knows your body better than you do. 
 
I went to see a doctor when I first moved to Florida.  I was crying easily because I had lost my husband just weeks before.  That doctor wouldn't let me leave without a month's supply of antidepressants.  I didn't want them and told her I had a reason to be crying so but she insisted.  That was the last time I went to that doctor.  I do have some brain cells left and I do know what my body is telling me.
 
So, again, in answer to your question....I do not deal with them.
 
Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

BeachGirl808
Regular Member


Date Joined Mar 2010
Total Posts : 217
   Posted 7/2/2011 12:21 PM (GMT -6)   
Andrea - blah that makes me mad. i've had the same experiences. i try and give the drs credit because i know they see a lot of weirdos, lol. i'll still haven't found any doctors i'm extremely happy with. it just takes so much time and effort and MONEY! Good luck!!!!
Taking 2 Lialda and Canasa 1x daily.

Protonix, 50 mg Synthroid, Migraine meds when needed

Also taking Probiotics and Fish oil supplements

iloveanimals
New Member


Date Joined Jul 2011
Total Posts : 18
   Posted 7/2/2011 12:48 PM (GMT -6)   
Andrea, I had almost the exact same experience with a neurologist. I felt like he had his mind made up before he even saw me, just from reading my chart. I think the problem may be that they don't really get what it feels like, and it's so hard to explain, that they think it's just mild aches or whatever and peg it as depression. They seem to want concrete physical evidence they can test, like a bad reflex or dilated pupils or something, and if they don't get that they don't know what to do and say it's depression. What they don't consider is that people like you and I only go to the doctor when we're really concerned and something has changed or gotten worse, and that we KNOW it's not just something "normal" and mild or we wouldn't be seeking help!
Yes, you need to "fire" them and move on to someone else. Once a doctor has proven themselves to not really listen and take your concerns seriously, they will never be on your side.

Marilyn K.
Regular Member


Date Joined Jan 2011
Total Posts : 250
   Posted 7/2/2011 1:55 PM (GMT -6)   
Before I found out what I had, I went to a Specialist and when I walked in I told him I had pain. Guess what he said, I don't treat pain.!! Duh

Marilyn K.
Regular Member


Date Joined Jan 2011
Total Posts : 250
   Posted 7/2/2011 1:57 PM (GMT -6)   
This might be a stupid question, but why do most of you go to neurologist for fibro.?

I'm Not Crazy
New Member


Date Joined Jul 2011
Total Posts : 7
   Posted 7/2/2011 10:00 PM (GMT -6)   

I have a LONG history with not-so-helpful doctors.  It’s more than frustrating, it’s maddening.  I deal with them in 2 ways.  First, I share with them what I’ve learned through research I’ve done on the internet and reading about my conditions (fibro, myofascial pain, sleep disorder due to fibro, and another sleep disorder idiopathic hypersomnelence).  I’ve made a chart showing the symptoms of each and what is similar and what is different. I also know what my top complaints are before seeing the doctor (headaches, fatigue, muscle pain, etc.)   If they don’t agree with what I believe is wrong or they try to give me more meds I resort to option 2 – Never see them again.  I went to a Pain Management Center last month based on a referral from my primary Dr.  I wanted to get trigger point therapy/massage.  The Pain Management doctor spoke to me for about 10 mins, concluded I had fibro (I knew that 13 years ago!), gave me anti-depressants (didn’t ask for them and don’t want them) and a referral for aqua therapy (been there done that).  When I asked the nurse if I could talk to the Dr. again she was rude and just gave me the prescriptions and note to follow up on 2 months.  After repeatedly calling to speak to this Dr. I encountered more rude and bitter employees and will never go back there again.  I’ve told everyone I know how horrible they were.  It is truly sad since anyone with pain just wants to be seen, heard and understood with compassion and some empathy.  Those people were crazy!

You need to keep looking until you find a dr. or specialist that you are comfortable with and will listen to you.  Educate yourself on your symptoms, treatment options, nutrition, and exercise before you see them.    You need to tell them what you want and what you will and will not tolerate for treatment, medications, etc.  My primary care doctor isn’t a specialist for fibro but she listens and reviews the reports from the specialists with me.  She listens to me and tries to find treatment options that I am comfortable with.  It took me 13 years to find a good one…so there is hope (not really promising given how long it took me, I know).  Educate yourself and keep trying.


AustenFan
Veteran Member


Date Joined Aug 2008
Total Posts : 1605
   Posted 7/5/2011 9:44 PM (GMT -6)   
FM Sufferer:

I'm sorry, I meant to reply to you, but then time just got away from me. I don't do anything specifically to treat my Meniere's at this point. The vertigo seems to have calmed down some, and I'm left with mostly balance issues from the inner ear damage. I still have problems with visual triggers, so I try to avoid them, and I have trouble with motion (cars, boats, etc.).

I used to take Valium and Benadryl prophylactically every night, but now I just use Valium if needed. I also used to take HCTZ, but I started having side efffects, so I stopped that, too. I still occasionally get vertigo, but it doesn't happen nearly as often as it used to. I have just tried to adapt my life to avoid things that trigger it.

There is a forum called Menieres.org where you can find lots of info. It's not as kind and gentle as Healing Well, but there is some good info. on there.

wifibro
New Member


Date Joined Jun 2011
Total Posts : 8
   Posted 7/6/2011 11:47 AM (GMT -6)   
I just plain don't deal with difficult doctors. I've been in that situation. I get up, leave, pick up a grievance form at the front desk and file it asap. I'm lucky to have found a great family practice doc who is up on fibro and other chronic pain issues. He is not afraid to prescribe actual pain medication for pain when needed! What a concept!
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