NeuroTalk Support Groups - Finding GOOD doctors...

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- - Finding GOOD doctors... (https://www.neurotalk.org/autoimmune-diseases/196439-finding-doctors.html)

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:

Quote:

Originally Posted by ginnie (Post 1025974)

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.

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

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???

Quote:

Originally Posted by abbyrition (Post 1026061)

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,

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?

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:

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:

Quote:

Originally Posted by abbyrition (Post 1026442)

I really do dislike having to spend so much of my precious energy finding good doctors.

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