Saw the Neurologist today...Im SO frustrated!! im venting
 

Im worn out. Too many problems and not enough answers. i saw a new doctor for my RSD today, a Neurologist. a nice man. i went to him because i wanted to try a diuretic called mannitol, that is used by a doctor to treat my inflammation that happens in RSD. i brought him the article. i talked to his staff before i went, and he said he doesnt use this that he has something better. my hopes were up. he didnt have anything for inflammation, he had something i hadnt tried for nerve pain, that might help. He wants me to go to a different neurologist at a university hospital about 2 hours away. Im sick of doctors. I know im preaching to the choir here...but Im SO over living this way. I realize i have no choice, i have to be here for my family until the good Lord decides otherwise. But i am struggling with understanding why my life is like this when it use to be so much better! i walk bent over with my walker, i stood up from sitting for a very long time at the drs office and pulled something in my hip...now i have one more pain that i dont need! i took some ibprofen, rubbed some muscle cream on it and i think i will lay down and take a nap. maybe i will feel better later. im glad i have a place to vent. i will make my next post more positive. i know you understand my frustrations! Lori

:hug:

I'm so sorry. Hope you start to feel better soon.

Hi Lori,
 

Sorry you are going through so much. I hear the depression and frustration in your writing.

I had no luck with Neurologist. I saw at least 3 and I also spent some wasted time going to the University of Denver. My PCP finally made me realize I was a guienna pig to them. They are learning hospitals and I did finally realize I was a learning experience to them. I had a good Ortho there and saw one good PM Dr. but he left the department. None of them did my diagnosing of anything though.

In our desperation to get out of pain or get it lowered we make some bad choices in what we do, I know I did and I've seen it with friends.

I hope that you finally find a Dr. that wants to help.

Ada

Hi Lori

Sorry to hear about your tough day. The only thing I can say about neurologists is, "just not worth the time". Sorry to be negative when you probably need someone to make you feel better. The two I saw were not sympathetic nor interested in trying to help me.

That said, I've had many docs who have been wonderful. Try to let it go like a wet duck--you know water just doesn't stick to them. :) Hope you feel better after your nap. Right now I'm needing one myself.

Hey Lori, sorry to hear about your frustrating day. It never makes us feel better when disappointed by a Dr., somebody who is supposed to help us feel better. It sounds like aside from pain, you need a break from these doctors, even for a week. sometimes I try to pretend that I am on vacation, living @ my own pace (just to settle down the nerves and pain) regroup and get back at it again!! You can vent when ever you like!!! I am always available

You've got to check a Neuro out before you go. So many of them get into 'that particular business', because they don't 'want to get dirty'.
A good Neuro appt. can hurt. Unless, he's a Ph.d in psych.

Anyway, NO GOOD DOC is going to give you what you come in and ask for! That's vanity!
Jeez, I'm a Master Plumber, and wouldn't dream of going to someone who thought 'they had it figured out' themselves!
What are you paying for?

Let the doc get you started at his/her own speed.
Please!
Then,
Keep closely in touch with him/her.
(if such is set up during the first appt. and it should be)!

So, Take it over again, and have more faith!

NEVER, EVER go to a good, new doctor, without having faith!
I've left lots of clients homes.

What do you expect of a doctor? Be real now.

Just let it happen, and keep in touch.
See, you went in prethought, with what you wanted.
Inflammation?
Aleve, motrin, Advil, Bayer, like that.
Whatever don't hurt your stomach.
(I use Aleve).
Celebrex doesn't work any better for me.

So, keep your mind open. Obviously, I'm not the one to tell you Lori, that you've been done wrong.
I don't think you have.
I think you've found a good Neuro, who will work with you, but, let HIM be in the drivers seat!
WE ARE NOT!
Out Doctor's are!

So, let it be, and trust the man!
I pray you can!

Pete

asb

Thank you all for your kind thoughts. I have a day of rest under my belt. i go to see a new pain management doctor tomorrow. My primary care doctor had been handling my pain care until i kept having too many flare ups and wound up in the hospital. I have a pretty good regimne now so i hope hey dont mess with it too much. he was referred to me by the neurologist i just saw last week.
i desperately need help with this swelling. I am still furious at this neurologist for not trying the diuretic on me. I am going to call them tomorrow and tell him i dont want to go 2 hours away for no reason. let him call there and describe all my problems and tell him how to treat me at his office! or let him come with me to the next appointment so he can see all i go through to try to move.
you know what else ****** me off....im overweight and he suggested a weightloss doctor. how can i lose weight being stuck still in bed? Then he had the nerve to say myabe i could look into surgery to cut off all the swollen tissue....im like are you serious???thats how all this nightmare started! my nerves were cut and RSD began to ruin my life!
im still frustrated!
thank you for listening!
Lori

Hang in there Lori. Do not give this mean doctor your energy, it will cause more pain and discomfort. Glad you are seeing a new Dr. tomorrow, start fresh with him/her and leave the neurologist in the past. I think at some point doctors lose their compassion and forget how to interact with people. See how it goes 2morrow and hopefully you will be moving forward!!! let us know how it goes!! Good luck~

No Pete

I did check out the Neuor best as i could. i told them why i was coming and to ask the dr if he would try the mannitol on me, they said he knew of it but had something better...but then when he saw me he wanted to give me cymalta had it didnt work, taking neurotin, doesnt work and then he said something called compezine or something like that..he said it will cut down on the sensitivity of my skin. none of this dealing with inflammation! i called many neuro drs before i settled on him. so even though he was a very nice doctor...i feel like my trip was a waste of time.

you dont understand
i have an insane amount of swelling on my stomach caused my surgeries i had before i knew i had rsd. i have 80lbs of swelling on my abdomen.

it doesnt make sense but prednisone use to help take the swelling off ...then it bacame less effective after the 2nd surgery. i am deformed and its so gross and i could go on but i wont. the article i found on mannitol and i spoke to a person who had used the treatment...all points in the direction that it could help me tremendously. im going to show the article to the pain doctor tomorrow and maybe he will find away to help me.

i will go in with a sunshiny attitude and hope he is compassionate and will listen.
thank you kindly
Lori

I am sorry and can relate. When you went to see the pain doctor did he suggest anything? For me the pain doctor worked better with pain and inflammation then the neuro. The neuro was more about finding dx and testing.
Some symptoms go hand in hand and stem from the condition so if you get to a better place with the rsd it may help with the swelling. I may be making no sense. An ex is people who have done ketamine it helps their pain but also you see if they had sores they go away. So I am wondering if the swelling is part of the rsd if a treatment that helps that will bring down inflammation.
When you see the pain doctor since you at one time had results with prednisone I wonder about another med to help with inflammation?
Hang in there and hope the apt goes better today