what is going on ?

[heartfelt77]

I have a question? The doctor called me about evoked testing today.  I had an appt on Jan 10 but, he wants to see me next week.  He said that the brainstem is abnormal along with the ear test.  But, my arms and eyes are ok.  Which, well I can't move my right arm so, I would say its not normal.  But, I'm not going to get into it with him.  He stated that if this isn't affecting your daily living that we should just watch you.  

And see if we should do anything at all.  I said STOP right there.  I'm not able to walk or stand.  I'm in a wheelchair and can do nothing for myself.  I'm getting care in here to help me because I want to take the stress off my husband.  So, yes its interferring with my daily life.   And, you should know that from me being in your office.  

So, he then says I will tell my office girls to change your appt from Jan10 to next Wednesday at 10 40 am.  

  Sorry I'm done dealing with stupid doctors. It wad like he was going in circles.  Just give me my report and my Aqua therapy script.  And see -ya later.    I'm not playing games anymore with my health.  He want to drag me around like a lost puppy.  Sorry , not this chick I've been through too much.  

  Then he states well even though your brainstem is abnormal I'm not concerned........   R u kidding me..........

Has anyone ever heard of this?  Or had an experience like this?

Any thoughts or comments?   Yes, I'm mad I'm not a dog. Who u can feed when u want...........    These r lives we r talking about.   Moving on next.

Yes, I will come see you just to get my report......   I'm getting my big guns out now.  Doctor that might put some hope back in my eyes.  One that might a little common sense.

Soooooo sorry venting yes big time....   I just tired of going through one bad doctor after another.

Take care
Misty.......     I hope this makes sense. And sorry for any misspelling.

[HVAC]

Been there done that. Well been doing it for 46 years. The Doctor may not have put a face with the chart. I get this all the time. Mostly they have no clue who I am. Now I am diagnosed it is not any better. I feel your pain. I try to see P.A.s when I can.

Alex

[LisaJF]

Drop that one, get a new doctor. End of story.

You're right, you've been around the block too many times and frankly, you're done with this marathon race that shows no end to the stupidity.

Sorry you're going through this.

Sincerely,
Lisa

[Lulu54]

Abnormal brainstem doesn't concern him?  Grab your records this week and run as fast as you can to another neuro and leave this one in your dust.  That is just plain crazy talk.  

I am glad he moved your appt up by a month - that just means you can move on sooner.

Lu

[SarahL2491]

he needs to retire, regardless of his age.
find a new one.....quick
play the game, get your reports, smile (make him wonder what you are up to_ and leave FAST......

Good luck

[heartfelt77]

Thanks for all your support guys. I really need it.  Me and my husband got into a big agruement over this. I was crying. He told me I should just stop seeing doctors.  I said I can't give up wonder if something gets worse. And I'm under no doctors care. I know he is stressed out. But, so am I.  I said I need support in fight this.  I also said it would be like watching a person slowly die. Knowing that u could possiable stop that from happening.

I can not just stop looking for answers.  I'm not that person that just gives up and watches me decline without doing something.  

So I'm going to go see him on Wednesday of next week.  I need to confront him on things that where said.  For my sanity.  And, get my report from him.  That's the only test he did on me.  I have all the other ones together.

So as soon as I have that.  I filled out the paper work for john Hopkins. Along with a rerferral from my family doctor, my reports, and cd. Will go out next week.  And, I will hope for the best.  It scares me to make this big decision. But, I know in my heart its the best thing to do.

I'm so lucky to have found this forum.  Even tough we are from all over the world and in different walks of life.  It's just nice to know that people understand what they r going through because of their own experience.  

Thanks to all....  Exspecially for helping me with info about john Hopkins.  I can honestly say if I didn't come across this forum with great support. I probably would have just given in and thrown in the towel.  But, because I know more know about my health and my symptoms than I ever did....  I'm fighting.......

I will be a winner one way or another with answers.

Thanks again for all u guys do.  After that phone call from the doctor I thought is it me  or is something not right with him?  Oh, well I'm very tired Im fighting to hold my eyes open.  Goodnite and God bless

I will keep everyone updated.  So for now, to be continued......

Misty

[twopack]

I guess I'm going to be odd-(wo)man out again.  I am confused.

Did he mean your arm was normal or the test on it was normal?

Where is "in here"?  This forum?  His office?  An inpatient facility?

What is his basis for stating the brain stem is abnormal?

Didn't he call to say he wanted to move your appointment up?  Or did that happen only after you started questioning him?

Did you lose your ability to move and function over time or did it happen suddenly?  What physician watched this (and scripted for a wheelchair) without charging forward to diagnosis the reason?  I'm angry with that one too.

So did you see this doc already or do you plan to see him again?

Sorry.  I can tell you are angry and very upset.  Do you really think there is something you can gain by venting your feelings once again in person?  If he truly doesn't care the only thing at risk is your dignity - in my eyes anyway.

Whatever report this is can be obtained without a visit, drama or co-pay expense.  You only have to request it and it should be yours to take to Johns Hopkins.  (I know!  It's weird but it is spelled Johns, as if the founder was pleural.)

I hope you can get your husband on board with your plan.  It must be hard on the entire family to have you so incapacitated with no explanations at all.  I do hope those come your way soon and at a reasonable price.

Mary

[Nancy T]

I'm sure this won't make you feel any better, but I too have a "highly abnormal" brainstem (from BAER/AEP/ABR testing--take your pick of acronym), and the neurologist who found it wasn't at all concerned and didn't have any explanation for it. Did "not need" to see me again.

Good luck to you.

[heartfelt77]

My arm on the test was normal and my eyes.  But, I'm not able to move my right arm.  But, the test showed it was normal.  And so my hearing and legs are abnormal.  Which the way the doctor put it on the phone was the brainstem was abnormal.  It was only after I questioned things that he said. He would move my appt. Up.  He know very well this has affected my daily living so why even bother to ask me.  

Like I said I'm tired of playing games with these doctor.  So, I'm going to go and see what else was said.  Get my report and move on.  I have been under the care of 2 neurologist.  Whom both of them have watched me decline. Then finally I decided to switch to this new guy. Who said he wanted to do this evoked testing.  I went through it.  And, its abnormal and he still wants to just watch me.  It may be ok for some for this to go on.  But, I can't continue like this.   I don't want to watch as I continue to get worse.

My left arm is good and left leg.....  They are weak but good.   I feel that I need to address my question with him to not only get answers that I need but, to make sure he was the facts straight about my situation before I leave his office.   I'm doing this not only for my benefit but the benefit of other patients of his.  

I will not be rude with him but, to the point and very direct.  I feel that these doctor went to school for a reason not to play dumb with their patients.  

I will be very blunt with them because at the end of the day again it my health. And my right.   I also remain still positive and know the direction I'm headed. So, for that I'm the better person in this.  

I feel this is the problem when u walk away from a doctor without setting the facts staight they continue to mistreated their patients.  I just won't continue to be their little door mat.  And won't be an abler for this to continue.

These r just my feeling and opinion...   Thanks for all the support on here from everyone.

Take care
Misty...........  Yesterday was a bad day. Today is a new day......  Sorry for the venting....  I'm sure everyone needs to from time to time.

Happy holidays....  God bless.

[heartfelt77]

Hello, thanks for responding to my post.  This has happened over time.  The doctor have given me muliply diagnosis none of which is concrete. Including, rsd and myelopathy.  So, I don't know what they are thinking.  This last doctor I have seen. When, I went for the testing he had on the test paper.  CNS diagnosis with positive hoffmans sign and paresthesia.  I have been drugged in so many different directions.

Thanks for your thoughts and concerns.

Take care
Misty