There is more to life than JUST....

[Sunnytoday]

The neuro said the dumbest thing when I was in the hospital. (well, I think it’s dumb… it’s up to you to decide if you agree with me)

First, he marched into my room and said “I want to get you out of here”  (ok, that's not dumb..just wait) I tried twice to explain how bad my legs were and how I couldn’t walk.

Then he said “all that matters is that you can get from the bed to the bathroom”.

I was floored! I said, “Sir, I can’t even do that right now, the nurses are semi-carrying me there!” He asked “do you have anyone staying with you?” I said “my mom”

And he replied “ALL THAT MATTERS IS THAT YOU CAN GET FROM THE BED TO THE BATHROOM WITH HELP”. Then he turned and walked out. (now, what do you think, how smart does that sound?)

Now, slapping a doctor is perhaps too violent, but he upset me. And he’s the doctor who still hasn’t read my MRI after 4+ weeks. BUT I THINK THERE IS MORE TO LIFE THAN JUST MAKING IT TO THE BATHROOM!

What matters is the ability to live life to the fullest that you can… I mean, being able to live, love, laugh, sing at the top of you lungs if you wish, see the sun rise, find a penny on the sidewalk, feel sand between your toes, eat ice-cream, watch a good movie, make new friends, enjoy hobbies, create things with your hands, try new foods….

Gracious, isn’t there so much MORE to life than what that silly neuro thinks.

I think he seriously needs to re-think a few things, patient don’t want to just survive, but to LIVE.

And, while they are living, they want to know WHY they are having trouble going further than the distance it takes to get from the bed to the bathroom.

What do you think?

[Sunnytoday]

You made me smile! :) While I don't think i HAD to be in the hospital, the nurses didn't want me to go home... they actually didn't give me my discharge papers for at least four hours- she said "I'm in no hurry to get you out of here... you don't need to be going home in this shape, I can't believe he disharged you".

I do know that this doctor was kind in the first visit, and for some reason has had a rough time manners wise after that- both on the phone and now in the hospital.

I do want to give him another chance- but only with my mom doing a LOT of talking. We are going to set goals and ask hard questions. If we don't find answers or at least start looking, it is time to move on!

~Sunnytoday~
PS I'll save the tomatoes for another time... you deserve my praise... I wouldn't have gone anywhere if it wasn't for your directions the other day!

[Quixotic1]

Well, this is where everyone throws rotten tomatoes at me.  Could the neuro, perhaps, have been talking about the reason you were ready to be discharged?  The people that get the insurance authorization for each day in the hospital have to work under some criminal and unethical demands form insurance.  It could be that they were denying further imbursement for you.  In which case, if the hospital wasn't delivering life-saving care and you could somehow make it to and from the bathroom then you met the criteria for needing to be discharged.

That was my second thought, because I have had to deal with this kind of s*h*i*t when I had kids hospitalized.  

If this statement seemed out of place with the rest of the behavior and attitude you have seen from this guy, perhaps he was talking about discharge and not about what you should be "happy with."

If, on the other hand, he is usually dismissive and harsh, then I second everything else that people have said.  If you see him again, then someone should begin the visit by asking, "Do you really think that all that is important in life is whether I can make it to and from the bathroom???"  Let him answer.

Quix

[Deb61]

Heather is dead on!  Don't put up with that kind of uncaring attitude.  I know it's hard, especially as young as you are (believe me, I'm not too good at advocating for myself).  Perhaps your dad or mom can help with advocating?  I always have my sister, mother, or husband come along with me to appointments.  My mother is the best--she's not shy at all!

Deb

[Heather3418]

I have gotten to the point in my life that if a doctor treats me that way I will immediately say, "With all due respect Doctor, would you want the same expectation, of going to the bed and bathroom as something that would be acceptable; if I was your loved one lying here?"  "Pretend for a moment that I was your wife lying in this bed.  What would you do anything differently for me, than you are doing now?"  "Please think about that for a moment."

I will try to fill the doctor with guilt...sometimes it works, sometimes it doesn't.  But I always leave, telling the doctor to think long and hard about what I said.  I will always tell them that it's my belief that with every patient he treats, he should be willing to give that patient as much of his medical expertise, as if it were a familymember sitting before him.  I end by saying, 'Thank you for listening to me and I hope you have a nice day."

Heather

[Fluffysmom]

I wish I had a reason to go to AL, I'd go to a MS group with you.  I'm not diagnosed either, but that is the fault of neurologist's who aren't willing to dig deep and find answers.  I'm committed to finding anwers, whether I have MS or somthing that hasn't been named yet.  Oh, yeah, Fluffysmom Disease! :o)  Kathy's Shake and Ache?

I think MS groups are for people in all phases, from needing information because they think they might have it, to those that have been diagnosed for years.  It should be a support group for everything you go through with MS, including all the time we spend chasing a diagnosis.

Oh, heck no, you're right on about the jerk needing to go back to school or maybe down the yellow brick road and see if he can find a heart and a brain!  I hope he has enough humanity to feel shame for his lack of knowledge and compassion.

Like I said before you deserve better.  Now go out and get it; we're all behind you!

Kathy

[LLWB]

I have a different take than wait and see. In the first place, I think you should call whoever runs your hospital, be it a board of directors, administrator, or, and report this idiot!!! Then I would take the money you will save by cancelling Monday's appt with him, and contact a "Big City" neuro who treats MS. Even if you have to fly there. This man, I won't dignify him with the title of "doctor" is a complete and utter idiot.....ah, I know, tell you what I really think! LOL This is just MHO.

Maggie

[Sunnytoday]

Thanks guys, this really helped me.

I think I will look for a MS group, although it scares me becuase I don't have a Dx yet.

I was kinda down on myself too, and this helped me see that if the neuro doesn't cut it, then I can look for another one... and it isn't just me who thinks that he is seriously needing better manners and perhaps better skills all around.
Good night, all!
~Sunnytoday~

[young at heart]

HECK WITH IT, THIS NEURO JUST NEEDS SLAPPED AROUND THE CORNER AND BACK.

HIS MANNERISMS STINK, HE HAS NO COMPASION FOR PATIENTS AND THERE IS MORE TO LIFE THEN GETTING TO THE BATHROOM.

IF MONDAYS APPOINTMENT DOESN'T GO RIGHT , ITS TIME TO SEEK OUT NEURO NUMBER 2.

T-LYNN

[Fluffysmom]

I think it's time to look for Neurologist #2.  Of course, you should keep your appointment in case this guy has developed some desire to help, send you for tests, read the MRI, etc., but it is probably time to look for a new neurologist.  This one seems to be stuck in a kind of limbo, himself.

I've read that visiting a MS support group is a good way to hear from patients who the good and bad neurologists are.  Is there one in your area?  Your mom would probably be glad to take you.

I liked your list of what matters in life, the MORE that we all need, crave, deserve.  

You deserve better care, and I hope you find it soon,

Kathy

[jensequitur]

I think wishforchange has it right, Sunny.  This guy is trying to help, but failing miserably.  He has a terrible bedside manner.  What he meant was that he needs to get you out of the hospital, over your flare, and back at home.  For you to do that, you need to be able to get out of bed and to the bathroom safely.

A lot of doctors sound like they don't care, I think because they're mad at themselves or at the system.  They come off as being abrupt, when really they're just irritated that they can't figure out what's wrong with you.

Or maybe he's mad at himself because he hasn't read your MRI yet!  At any rate, this fellow doesn't seem to have what it takes.

[wishforchange]

Feel pity for your doctor.  The man is institutionalized into the tiny world of his career and has forgotten the whole point of what it means to be honoured with the role of healer.  Silly, silly little person.  There is NO excuse for what he said.  The point he may have been trying to make was that he thought you were better off not in hospital (as may well be true - hospitals are dangerous places), but his complete lack of tact or even simple understanding of the facts is enough for you to question his clinical competence, formally.  I would report him to his senior consultant.  This is not just about 'bedside manner', this man has shown a lack of understanding both of his patient and your circumstances, as well as your clinical condition.  I am a person who fights directly (not physically) with incompetent doctors, and have had a lot of flack back, but that is how I am.  I feel the need for patient safety to be a priority.  He is in a very responsible position, and not behaving approriately.  My opinion may be strong, and others may think it is too much, but take it as you wish.  I just get so angry when people who are at their most vulnerable are subject to this kind of abuse.  Think about whether you wish to complain.  You may not get much result, but you'll at least have put another chip in this %$%£^$^...etc man's reputation.  My nature is to fight, go with your nature though.  Please don't let him get to you whatever you deciede, he's not worth it.  And yes, get another doctor!

[mercyone]

It all sounds terrible - I have had my doubts over many doctors and am a tad jaded - but I do read here where people are getting help - can you travel to another town where a specialist might take more interest?

Mercy

[Sunnytoday]

well, I think that the fellow would have a lot of options... if he would get moving. He hasn't tested me for anything, and hasn't looked at any of the tests any other Dr.'s have run including the MRI by the opthamologist.

In the first visit he seemed very good, very concerned and it looked as though he would get a move on. however, after that he hasn't done a thing. I think I've mentioned on here how he said to "just handle it" when I called in about my last flare.

I'm going to give him a chance with that appt. on Monday... but after that, perhaps I DO need to try another one. I just hate to Dr. hop, especially since the neuro's here are known to be rather "bad"... if I may put it that way.

He is the first one I've tried though.

I think it was another neuro that was on-call that told me that I should get some home-PT... but of course that never happened.

It not that my legs are weak... I think... it rather that whatever makes them "work" isn't behaving properly. um... that's not very medical sound, just my observation.

~Sunnytoday~

[mercyone]

I am floored - simply floored. Have you asked to be referred to a physical therapist that might help you improve your ability to walk? I think the Neuro is out of options - he has no answers and you need answers..

Mercy

[monotreme]

Is there any way you can get to  a different neuro?  This man sounds terrible.

Elaine