Finding GOOD doctors...
 

I am wondering how you find your doctors?

Do you just go where you're told by refferal?
Word of mouth by friends? What about the times you don't have friends to advise you?
Do you choose on proximity?
Or your insurance providers list?

I'm looking for a few doctors, but with the anxiety I have for doctors, I'm looking for a better way. I spent 7 years of my life knowing something was wrong, undergoing numerous testing, having doctors look at me like I was crazy, or looking for drugs, or just trying to push pills on me. The non-listeners, the bad advice providers, and the uninterrested or too busy are all I seemed to find using any and all of the above ways listed above. There has got to be a better way. The internet searches are a joke and unrealible, so what does one do when they don't know where to turn? And then to add to that trying to find a specialist that has experience treating a disease outside of their speciality, but that affects their speciality... For example a dentist familiar with Sjogren's or PN, or a dermatologist with direct experience treating patients with lupus, not just one that "knows" about it, or has seen a case or two.

I think Angie's List has a doctor section, but it's a paid for site, so I'm skeptical. And aprehensive.

So does anyone have a process they use that works in getting good doctors that are knowledgable, care about treating/fixing/solving the issues?

What an excellent question but one that has no easy answer.

I am VERY, VERY fortunate as I have 3 docs that are fabulous. I trust them, they listen, they help, they keep me alive, they respect me, they are the best of the best.

I also have seen many docs that do NOT get my approval and I refuse to see any longer. Example: My lifelong eye doc passed away and I have spent years trying to find one that I like enough to stick with. My most recent one was a complete disaster on the first visit. Thought maybe she was having a bad day and went for a second visit a year later. Was even worse. I will NOT return. She was referred by one of those 3 docs I dearly admire so not all referrals work out.

By accident one day, I discovered in talking with a friend that she and I had seen the same doc. She did not like him at all. Guess what..... he is one of my favorite 3. My point is not everyone fits with even the best of the best.

I suggested to a friend that she try my doc, another of my 3 favs, when she was looking for one. She liked him OK but was not overwhelmed and has since changed to another that she likes much better.

Finding a doc that meets all our requirements; knowledgable with our conditions, listens, can get an appt in reasonable time frame, nice, worthy of our trust, etc. etc. is a very difficult task. I am still looking for two docs that will fill my needs for two specialty areas of medicine for several years now. I have 7 docs. 3 are super duper top of the charts. 2 that are OK but nothing to rave about, and still looking to replace the other 2.

Angie's list is customer driven and only money is provided by the customer, NOT the business or physician. I would not discount it out of hand. Vitals on the internet is a source that lists comments by patients. You can get an idea of what patients have to say about the doc there. Referrals by other docs, friends, family, are all good sources, too but keep in mind that the relationship between a doctor and a patient is a very personal thing and no two people may feel the same way about a particular doc.

Good luck in your quest but I would look at Healthgrades, Vitals, etc. on the internet as a possible source if you want to check out a doc.

Some people like docs that are in a group practice and have access to the other docs when needed. I personally want to see MY doc, not an associate so what works for me may not work for others.

Finding the right one is a daunting task. Good luck. Keep trying till you find what you want and need.

Hi Abbyrition
 

Hello, I am glad you found Neuro Talk. I am also in your neck of the woods. Just south of you. I do have doctors that took me many years to find. My PCP is the best and I would tell you to come this way if you have a notion to. I also go see a physiatrist, integrated medicine in Sarasota. I have 4 auto immune diseases, I hear you. It does take a doctor willing to listen to you. Keep a journal and get a copy of all the records and testing you have done. I actually got my DX at Mayo clinic some years ago. There is a Mayo clinic in Jacksonville you might want to consider. As far as how they treated me, it was the best. Event though I didn't like what they told me, they got to the bottom of what was wrong. Feel free to contact me for any more information you may want with the private messaging on this site. I sure will try to help. I do care. ginnie:grouphug:

I have seen many, many doctors over the last 17 years dealing with my PN and Sjogren's.

My suggestion is to look for "Centers" associated with your condition and large teaching hospitals. They usually have latest treatments and an 'interest' as these guys are willing to learn in the process.

For instance, Sjogren's, Johns Hopkins has a Sjogren's Center. There they have a, rheumy, ENT, Gyn, neuro and ophthalmologist...all in one center as they are all a part of the care required for Sjogren's. If you have any other needs, then the doctors there are connected to others within JH that are 'experienced' in dealing with Sjogren's patients. It was the best move I ever made.

BTW, just as your example questioned, I needed a dentist experienced with my Sjogren's. I called several and 'questioned' the staff about their experience. Pretty much did a phone interview until I found one that fit my needs.

Many places are doing these types of Centers now. JH has one for PN, Lupus, Scleroderma, arthritis...and many others.

Thank you all for responding! I'm glad many of you have doctors worthy of raving about!

Hope you will too
 

Sure hope YOU can find a doc worthy of YOUR raving, too.

Wishing you the very best in your quest as I know how difficult a task.

Of my 3 favs, I am scared that one will soon retire and I may never be able to replace him.

Oh, I was also wrong on my prior post. I have 8, not 7 docs. Too many to keep track of these days. I guess the reason I forgot #8 was because I only see him once a year and would like to forget him. :winky:

Hope to hear you raving soon.

hi
I have also a suggestion for you:
Try to find out if your area has a support group for Lupus, Sjoegren, Neuropathy or what you need, or also Rheumatology

There should be one, I know there is a support group for Vasculitis up there in Tampa area. I live in South Florida, I found a support group for my particular autoimmune disorder. I called, and I had E mailed to me a list of doctor of recomandation that had some experience wiuth my particular problem. You could give it a try!

I was lucky to have a rheumatologist referred by my dermatologist. I tell you, this doctor is the best! She is with the University of Miami. This same system they are with the University of Miami Miller School of Medicine. There is also one professor there that teaches regarding peripheral neuropathy, and he sees pations once a week.

It could be worth the drive down to Miami, 3 hour or so from you

Good luck

hi, one more thing:

I also went to the Mayo Clinic in Jacksonville, and I was not that impressed. I spent a lot of driving time up ther, 5 hours each way, plus Hotel for 3 nights, and they really did not do any further researc than my doctors locally had done.

So, I really was not that impressed. But again, poerhaps other had other needs, we are not all the same, we have different needs. The Mayo Clinic did the same tests the local doctors had done down here in south Florida,

But, my rheumatologist, actually wanted me to go to John Hopkins, and I had contacted them, had referal and all. I hear John Hopkins has big centers for many different autoimmune disorders.
They are far away, I think if you need to get a diagnosis, it is worth spending a few days in hotell and go to theese ceters, then what they do , the send instructions back to your local doctors

Hi synnove
 

I am so surprised that mayo was not good,
I went to the one in Minn. Good grief I was put through all kinds of testing that was not done by any of the ten doctors and facilities I saw in the mid west. they also had private families who housed you for very little money. I found that through mayo patient advocasy person. I am wondering if that program isn,t available any more. Maybe there is a big difference in the facilities, I don,t know. I sure have recommended that dx facility,, and now wonder if they atr not all that great. At the time I went, I had more or less an orphan disease. Meaning very few of the population had this auto immune problem. Have you since been able to get a dx? Sorry for poor spelling, on my nook,and have some issues with using it. Thank you for telling me. Maybe I should not speak so highly of mayo.

Synnove, that is great advice I hadn't thought of. The lupus support group serving Florida is in Fort Meyers (if I remember correctly) which is quite a long drive, so I never got in touch with them, simply because I never thought I would be able to meet up with them. Especially when how I'm feeling can change daily, or even quicker.

I really struggled through my years of non-diagnosis with the doctor issue much more. My diagnosis now is SLE with secondary sjogren's, an abdominal hernia and possible diverticulitis.

I have a good Rhumatologist, and Hematoligist (Anemia), Neurologist, Psychologist, and Optamologist.
I am in search of a good Dermatologist that has Lupus experience, a Gastrointerologist that has autoimmune experience, and Ophthalmologist that has Sjogren's experience, as well as a Dentist with Sjogren's experience.

I know that may be asking a lot, but I figure if I'm paying to go to a specialist, I'd like them to have a bit of experience with how to deal with what I've got on my plate.

I don't need them to be nice or hold my hand, but what I personally look for in a doctor is they listen to what I'm saying, about what I want as my goals, and can explain to me the whats and whys of my condition and the whats and whys of treatment. I also need them to be knowledgable, and to be able to say, "I'll look into that" if they don't know the answers to my questions.

The worst offender doctors I've had said/did things like:
Primare Care - "Are you exercising? you just need to lose weight."

Gastrointerologist - Lied to me about medications for a proceedure, and then when they were called out said "I would never say that". Luckily, I had brought the same person with me to the consultation and the proceedure, so I had backup the doc did say it, but it didn't make any difference in the long run, except that I had an advocate.

General Surgeon - After explaining what makes my symptoms worse the doctor told me to do all those things that make me worse, and when I asked how to deal with the aftermath, he said, "Oh I'll have Saturday appointments soon so you don't have to miss work."

The one I hate the most is, "are you on any anti-depressants? I could write you a script for..." no thank you, I have a non-medicinal treatment plan with my psychologist. But then the doc asks again 3 more times. I've gotten this from my primary, the general surgeon, the gastrointerologist, and my Rhuemy. Why a gastrointerologist should be prescribing antidepressants for depression is beyond me... However I am not going to put my mental health care in the hands of the guy in charge of rooting around in my butt. Seems like common sense to me.

Luckily, when the Rhuemy continued down that path after I said no, I got visably upset that he wasn't listening to me, he noticed, and then just wrote a referral to my psychologist to consider an nsaid based path, instead of writing out a perscription. He gets to stay my doctor.

There are others but those have been some of my worst over the years, mostly coming from before getting diagnosed. However, the experiences with doctors have left me with such an anxiety of new doctors. I can't bring myself to go alone anymore, and I procrastinate even searching for a new doctor for fear I will be facing inexperience, lack of care or motivation, or being pushed drugs on, and of course, the you don't look sick why are you here mentality.

I hope that provides a little background into my actual needs, and experiences I attempt to overcome. I guess I feel if they have experience with what I'm going through and how it affects their speciality I won't be faced with just, "you're overweight - lose weight" (mind you I am overweight, I do watch what I eat, love working out, and am very active with my 33BMI {provided I'm not in a flair of fatigue or disabling joint pain} - but I also know being fat didn't give me lupus, and losing weight won't make it go away... I just wish the doctors knew that.)

I really do appreciate all the responses, and even concern for me personally! It's so nice to have these boards, and the people on them for support!

Hi Abby
 

I don't go to any doctors appointments these days alone! Good idea. I personally think they listen better, when someone else is in the room. Took me years to find a good crew to work with. Have a good day Abby. ginnie:grouphug:

I agree. The Mayo Clinic obviously has different doctors at their other facilities. I know the one in MN is excellent.

hi, again.
to Abby.
I agree, when you go to a highly paid specialist, you expect to get quality health care product for the money being spent, by the patient, and the insurance company. Do yoy know, that when you go to a specialist, for the first initial appointment, that doctor may charge the insurance company as much as $ 800.00 for that visit. I have seen the insurance report! And for a fallow up apt, they charge about $ 300 - 450 depending.
So, we have to take care of our selves, make a list of priority questions for the doctor, and make sure we get answers.
But I know, it is not easy.
I have read your posts, Abby, and I have experienced so many similar things over time in doctors offices. They have treated me as if I was an idiot, and I gues they were hoping I would beleave them
It is hard to find a good doctor. In 2 years, I have seen 7 neurologists. I have kept 2 of them. One is my " primary neurologist" He has realy helped me, and I consider him as having saved my life once. He repaired my cerebral aneurysm.
The other, is the one I mentioned in prior post, he diagnosed my neuropathy.
You see, I have found that especially with us that have diagnosis of neuropathy, it is very difficult to find a doctor that can "objectively" document regarding your neuropathy.
Many of the symptoms we have, are what we can feel, so they ( the doctors) write in their notes " subjective" and that do not fly as far as getting a diagnose.


To Ginni:

To your question, have I gotten a diagnose now.
The answer is yes and no.
The doctors are treating me for ideopatic (terrible) neuropathy with symptom control. My rheumatologist is treating me for vasculitis. I have been on Methatrexate for months, and just completed a 6 week Prednisone treatment.
She continues to periodically test me for underlying autoimmune disorder.
there must be one that is causing the neuropathy.
My local neurologist, is going to do a spinal tap in the nex couple of weeks, I do not have the time or booking yest. He is admitting me to hospital next week for a 72 hour EEG study. which is video monitored, and also a sleep study. This is due to some episodes at night the belive could be simple partial seizures.
Now, coming back to The Mayo Clinic.
The symptoms I mentioned above, has very scary to me. So at the Mayo Clinic, I refered to theese symptoms to the Neurologist there,
When the doctor said, " it sounds like a panic attach", I got very upset. Theese symptoms has woken me up from sleep. ( I do think that it could be due to possible sleep apnea, possibly bringing on theese possible seizures or Aura)
The Rheumatologist I saw up there at the Mayo Clinic, was very nice. She was a Fellow, so her assessment and recomendations had to be OK ed by a Rheumatologist by The Mayo Clinic.
He came in to briefly see me 10 minuets or so.

They both agreed with what my local rheumatologist had been doing, so they wrote in theyr notes, agree and continue with present treatment.
So, I really did noit have any further investigations as my local rheumatologist had hoped they would have done.
because my lkocal rheummy has been trying very hard to find an underlying reason for my neurological symptoms of small fiber neuropathy.
Thank you so much for your time to read this

Hi
 

They didn't do a proper work up at Mayo. There are tests that can be done to see if your immune system is working. T @ B lymphocytes for example. These are the cells responsible for fighting off infections. In my case, I have all I need but they are attacking me as a foreign object. The fight to flight response is involved as well. I guess my cells get confused like I do:(. This test should be done for you to help determine if you have an underlying auto immune disorder. A punch biopsy for PN is done too. I can't tell you how many tests I had, I just know it was four days of intensive, doctor to doctor. Ask about specific test you are having done. Look them up so you know what they are doing to you. Do you have a copy of any they did at Mayo? ginnie:hug::grouphug:

hi Ginni
Yes, I have all copies of all tests. They did do some blood test for immunology, I think mostly that was already done. But, honestly, I thiunk they are difficult to understand.
The only other test they did at Mayo, was a "tilt table" test for autonomic reflexes. In this test was also includes a "sweat test" which was positive, so they confirmed small fiber neuropathy.
My neuropathy neurologist said it was not necessary with a nerve biopsy at this time. I do know about the punch biopsy. I think he felt he had enough evidence by neurological exame, EMG and NCS and the sweat test to confirm the small fiber neuropathy. The neurologist at Mayo also said the same.

But that is all fine and dandy, but we needed to find out the underlying autoimmune disorder. I think that is where the Mayo Clinic did not come through for me.
I should have gone to the John Hopkins.
No, I do not think I had the T cells done.
What I have done,m I have printed up the chart Liza Jane;s charts, and I am entering all my labs. So next doctor's visit, I will point out what is still needed regarding the auto immune.
But I thin k we have to cut off here, I do not want to steal off the thread from Abby regarding finding goog doctors.
Are we still on the right subject???

Frustrating
 

Hi,

I am so sorry you have had to deal with not only your illnesses but the medical personnel too. I DO understand what you relate. I was diagnosed with diabetes a few years ago and now EVERYTHING is blamed on diabetes. The neuropathy that I have had for decades is now just dismissed as diabetic neuropathy and guess what, I do NOT yet have diabetic neuropathy. Weight??? Yep, if you have any extra pounds, you get the weight remarks. You are so right, weight did not cause nor will it remove your illness. When will docs realize that weight gain can be a natural by-product of chronic pain and limitations in activity? I was a perfect weight before I was cut down by my illnesses and became sedentary. I do not burn a lot of calories by breathing. I closely watch and limit my diet but lack of activity causes weight gain no matter how you look at it.

Your desire to find a doc that knows your conditions and can answer and treat you "properly" is not an unreasonable request. My heart condition was continually dismissed as GERD by one physician. I have never had any gastro problem but he kept insisting I take prescriptions for gastro which I refused and found another doc. Guess who was correct about my heart condition? Me, And I have diagnostic proof of it. I, too, get sick of the throw a pill at it attitude.

Sorry, I did not intend to talk about myself, I just wanted to let you know that many of us here really DO understand what you have and continue to go through in a quest for a doc that knows, listens, and treats appropriately.

I could go on and on but that would just make me relive some of the same horror stories you experience. Keep looking. It is so very frustrating but you can't give up. There IS the proper doc(s) for you. I just hope you find them soon. Your wishes are very reasonable and should be filled. Nothing worse than a flipant doc and sounds like you have encountered your fair share of them. Some docs overbook and spend such limited time with us, they treat us like an assembly line and treat us in that manner. They fail to realize that every person is unique, and not just a host for a condition.

I am going to try to find & schedule this week, my sleep study, the dermatologist, and dental but scheduling that one for January.

I really do dislike having to spend so much of my precious energy finding good doctors. Thank you for all the help & personal stories too!

Ginnie, did you have personal recomendations for our area, should I PM you?

Hi Abbyrition
 

Yes PM me and I will tell you about who I see and how I found them. ( I spent 5 years on the hunt!) All my current physicians work together if you can believe that! Tell me what kind of physician you are looking for. ginnie:hug:

Hi Abbyrition
 

Sure, PM me and I will tell you who I found in this area. I had a lot of help, including the Gent who helped me with Disability. The doctors I have really are good. It took me about 6 years to find the team I have now. Being in good hands, is half the battle to any medical condition. If you have faith in your physician, it puts your soul to rest so you can heal better. ginnie:grouphug:

Don't we all. :rolleyes: OTOH, it can be some of the most worthwhile energy/time spent—strike that— invested if/when the payoff is more energy/time to spend in ways we'd rather.

Doc

I agree with you all regarding spending time and energy in finding good doctors. I have my list too, of doctors, I mean.
And by the time you find yourself at the end of the rope, and feel that you have to start at ground cero again, I have experienced more than one time comments from doctors like" She has had extensive work up by several doctors".
I have felt almost like I have to take punishment for trying to find the right doctor that is willing to put their professional pride to a test, and be willing to investigate and research to find diagnosis. Many of us here on this forum have multiple diagnosis ofautimmune disorders, and many of us have undiagnosed problems. Many of us also have neuropathy( me included) All theese conditions are very time consuming to diagnose.
We, as patients should not have to feel like this.
Good luck everybody, and do not give up.

I'm in the process of finding a new PCP because well...it took years for the diagnoses I have now. She never offered any blood work done that was offered by my new neurologist. She kept pushing meds on me. I had pluresy three times this year and she never was concerned. Not to mention I called to ask for refills for my lexapro Monday, well it's Wednesday now and they never bothered to refill it. Every time I would call, they blew me off! I am not happy with them and I am changing docs ASAP.

I wish you luck in finding one of the good ones... Seems there are a few out there...

Hi clsterwart
 

You are being your own best advocate. I hope a number of people will follow your example. Happy Turkey day. ginnie:grouphug:

It seems I have had to be my own all this time! My doc never even considered the tests I just had and now , I have this new diagnosis that has been the cause of my issues all along!!!!! :mad: