Alice wrote:


but, although in my personal life, I have and am doing that, I don't dare do it with my physicians. I only "give them a piece of my mind" after I realize that either way they are not going to do much for me anymore.

Reading this feels so dark and scary because I feel like I live the same way. I don't dare give them a "piece of my mind" even after I'm sure they won't give me any help. Because I don't know what the repercussions of that would be with other doctors I may need help from. I want to make sure that I someday find a doctor who can diagnose me and treat me and get to know me first before I start making complaints because I'm so desperate for help and so little is offered that I feel like i can't risk it.

I had a doctor who removed a kidney stone from me at a time when I was very, very sick and frantically looking for answers. Of course I'd hoped it was the kidney stone but that was completely just hope, it wouldn't have made any sense. Anyway, after the surgery my stomach bloated out to where I looked at least 9 months pregnant only more rounded on the sides if that makes sense. I called and called and called and couldn't get a response from this doctor. My good friend finally said, this is serious you need to just show up and make him see how horrible this is. So I did. He told me well you are probably faking that you have fibromyalgia to get pain medication and narcotics will often bloat a person up like that. I was stunned. Horrified. I never dreamed I would be treated so badly. I had been *fighting* the label of fibromyalgia for months because I realized that while obviously untrue in my case it had also become a label in my region for kooky nut who pretends she's sick. And by the way I have never, ever, ever had a prescription for pain meds except for the tylenol codeine they sent me home with after the birth of my children.

I still haven't filed a complaint against him! I was at that point feeling so cringing around these doctors like some poor scullery maid. Don't get me wrong, I was angry as hell, I just didn't dare complain until I had gotten help and treatment elsewhere (which I still haveh't obtained). I was never that way! I was always firm and professional and respected. I'd not ever been treated with disrespect until I set off to find out what was wrong with my health and then I had so many shocking encounters that I guess I had a hard time finding some equilibrium from which to relate to these doctors who sneered, dismissed, waved the referral marked "fibromyalgia" in front of me. If you're a normal, well educated, well spoken person you just can't see that coming and you're going to be ill prepared for handling it. I went through an "is it me?" stage where you wonder why, for the first time in your life, you seem to impress people strongly with the idea that you're nuts or a liar! And I felt that to get even the smallest nugget of interest in my case, the smallest effort to run tests or think about my symptoms was very rare indeed. You know what I felt like? I felt like the pigeon who has food pellets randomly dropped into his feeding tube and begins to stand sideways, with one eye closed and the opposite leg in the air believing that that will bring on the pellet. I went from being a very self confident, intelligent, well spoken person to wondering, what if I present myself this way, will it work, will that make this doctor want to help me? It's just all ridiculous of course. But I was physically very weak, very scared, very vulnerable. It's hard to think straight and be your usual tough cookie self at those times.

Why are we so afraid of pissing these doctors off? For just asking for basic medical treatment? I guess we've all been blown off so many, many times that if we do find someone who will help us even just a bit we're afraid to look crazy, be too demanding, too knowledgeable. Is part of it because we're women? Yup. I think so. Going to a doctor is like being thrown back in time when women were considered hysterical and definitely inferior in intelligence. And by the way, don't ever tell a neuro you have an advanced degree in math. It won't go well after that, trust me.

And Alice, I live in two worlds too. One world is the world of the you-don't-seem-so-bad medical world. The other is the real, real world that most people inhabit who look at you like you're crazy when you say I still don't have a neurologist, the last one told me I'm okay - and all this while the right side of my face is melting and grimmacing and overall giving off the horrifying sight of a halloween mask. Suddently they think you're crazy because of course a person looking like that would get immediate and very serious help!

And you are both right: none of this makes any damn sense.

The number of replies this post has garnered in such a short time is a sad statement on the poor "care" many of us receive from doctors. :Bang-Head: Neuros, especially, seem to be notorious jerks. :mad:

I soooooooooo understand your desire to smack your neuro. However, among other things, you probably would end up in jail. If I had any strength, I'd still smack mine as prisoners seem to get faster access to healthcare in the province where I live. Unfortunately, my weak arms have forced me to settle for a vodoo doll. One guess where I'm sticking the pins...:icon_evil:

If I may make a practical suggestion, befriend your doctor's secretary. Give her chocolates at Christmas, flowers, vegetables from your garden, whatever... It's the secretary who schedules treatments etc..., and if she knows your situation, she may steer the doctor in the right direction. Chances are he's an SOB to work for and she doesn't like him anymore than you do.

Cheers

I like my neur
 

Guess I'm one of the lucky ones. I like my neuro and he was the first one I went to in July 09. I first presented with only ocular but tested positive for ACR antibody so he started me on Mestinon and Prednisone immediately. During my recent "mild" crisis he hospitalized me which turned into an 11 day stay including surgery for my thymectomy. He visited me every day except for 2 Sundays and those days someone else from his practice came. I worry that since he's 66 years old that he may retire within the next few years. He's very fit and has more energy than me, but it's a concern. Now I do have an issue with one of his assistants :(, but I'm nice to her since she's a "gatekeeper" to him.

Had to weigh in on this topic ...

About 1 year before my dx, I had fairly significant fibrotic swelling in my legs and hands. My GP sent me to a cardiologist for a PDA/PVD test. While the tech did all the tests, the Dr. spent about 15 minutes before (and after) just talking to me.

He asked what started all this - - and I explained that my arms would get fatigued with work. The more I used 'em, the worse it got. And I had the feeling of a lactic acid overload in my legs - unwarranted for the amount of walking I had done. To me, the swelling was a detail - it wasn't the problem.

The tests were all normal and he sat me down and said he did not feel there was anything cardiac or vascualar to be concerned with at all......however, he did think I had something called MG!! He expalined it a bit, told me it's difficult to dx it and gave me a referral (who unfortunately wasn't in my health plan).

It took 1 year, 1 rheumy, 1 ortho, and 2 neuros -- but once the dx was achieved, I did something I have NEVER done before. I handwrote a thank you note to the cardio. Told him he was the the first, he was 'right', and - if I ever needed a cardio - he would be my very first choice.

My point? Absolutely, be appropriately critical of your docs. And do your best to find the doc with the right chemistry for you. But it would also be nice if we thought to acknowledge the good ones - and let them know how grateful for their expertise and care.

I'm hoping I never have to see that cardio - - but I'll bet he'll take me on as a patient if I do!!

Sue

(PS. after 6 months of Mestinon, all the fibrotic swelling is gone - just as my neuro predicted. Theory is that muscles that don't work well have a hard time supporting the lymph system in 'active' folks. So the lymph can pool and cause fibrosis.)

I have recieved many notes like the one you describe. and have had many patients stop me in the corridor and say- you have saved my life, you were my angel in white, I will never forget what you have done for me. I guess this is one of the reasons that my hospital is ready for me to work, despite my significant limitations.

my MG was diagnosed 5 years ago, by an endocrinologist, after 10 minutes of hearing my story and examining me, and telling me that the mildly abnormal thyroid tests that I had, were not responsible for any of my symtpoms. and it took an amazing number of physicians, hospitalizations, tests and therapuetic trials, and a very significant deterioration in my condition, going from someone who was able to work full time, including night duties, and only had some mild occular symptoms, weight loss, and respiratory difficulties on exertion to being almost totally wheel chair bound, requiring assitance in almost every activity of daily living and intermitent respiratory support, until it was finally verified.

it is true that I have a very unusual variant of this illness, but so what. I have seen many patients with unusual variants. patients aren't supposed to read the text book before they come to their physicians for help.

my current neuro is amazing, and possibly if I have reached him before things may have been very different. I was so greatful that he was ready to be my partner in this, and try to correct the mistakes of others. was ready to think about my illness, even after it preplexed the best world leading experts. I know that not many physicians would have been ready to do that.

well, like MK said, there are a lot of mixed feelings.

Thanks everyone
 

I just want to thank everyone, especially Alice, who has participated in the dicussion on this thread. I had no idea when I posted about my frustrations with my neuro that there would be so many reactions and so many heartfelt and honest comments. I am humbled by your support and your experiences and your willingness to share them with me and each other. And I have learned things from all of your experiences. This is truly a wonderful site and I'm so grateful and happy to have found it. I sincerely hope that in this new year each and every one of you can get the kind of care you need and deserve to get, and that you will all have (or find) docs who listen to you, value you, treat you with kindness and respect, and give you the care and treatment you want and need. You all deserve the best, so please don't give up on doing what you can to get it! I wish you all better health and the fulfillment of your deepest desires in 2010.

Thanks so much again. I feel blessed to have been a part of this conversation.

MK

MK'

no doubt that you have opened a pandora box, but it seems that you have also let hope come out of it.

hope that it is also so for you,

take care,

alice