[Annie59]

I am trying to wade thru tongiht. Hour by hour. The doc I saw apparently didnt want to see me. She said some of the most rediculous things. Scary, hurtful things. When she actually said she want me to just go to my internist and 'not bother' my great pulmo I saw last week who found all the stuff he did I felt like I was dropping into a black hole. My daughters head was down as she was as stunned as I was. I was trying to not cry. I fought back at one point and said kinda "whatever as long as I get the mestinon for my breathing....' She didnt deny me that tho said that didnt involve her. One of her students wrote something down quickly so I think she might be on my side but couldnt say much at that point. She said later something supportive when her teacher this doc left the room.

I had too much hope. I left that room in a bad bad place feeling like ....I cant say what I was feeling like. I am stunned by this turn of events. I think this process is killing me more than the disease. I think I have to stop somehow for a while.


Thank you for your wonderful thoguhts and wishes. I so wanted to tell you a good story when I read them. But at the same time maybe they will give me some peace so I can sleep tonight at some point.
Annie59

[AnnieB3]

Annie, First let me say that I'm very sorry you were treated in this manner. It is unethical to do that to patients, not to mention simply mean.

I'll just come right out and ask . . . were you seen at the University of MN? If you were, then it was outright arrogance that got in the way of your good care. If you went there, I bet I know who you saw.

It's very sad that prejudice and preconceived notions of patients get in the way of getting good care. It's a reality, however, especially among some neurologists. Our state is notorious for having quite arrogant neuros, even when they end up being completely wrong.

What exactly were the results of the breathing tests? Do you have copies?

Are they insinuating that you are a hypochondriac? Then what was his excuse for your inability to breathe well?

It's probably a very good idea to hole up for a while and recover from this insulting appt. What you really need is a good TEAM of doctors to evaluate what is going on. They might be missing something. Again, if you need any referrals to good doctors, let me know (since I live in MN).

So many of us have been where you are right now. It completely sucks and is unacceptable behavior. Whom else can we get to help us if doctors won't?

It makes me want to scream.


Annie

[craftyRCC]

Annie, I'm so sorry your visit yesterday didn't go as you had hoped. I am in total agreement with AnnieB3. No one should be treated that way, you have a serious medical problem and should be treated with respect and dignity.

I wish I could just run next door and give you a big hug, but you live so far away, an internet hug just isn't the same!

Relax, take a deep breath, have a cup of tea. It will all work out eventually.

Stay strong,
Rachel

[mrsD]

Sometimes doctors can be so clueless!

Let me give you this story about my son:

He was born very preemie. He did well, and I took him home at 4.5 lbs because the doctors trusted me. Well, as time passed at the well-baby visits the female doctor in the group brought in a resident to observe and then examine him and asked permission.
The pediatrician was rather pushy in style and loud and abrasive, but I was new to it all and ignored those warning signs.
My son was about 7mos and she asked if I had questions. So I asked the same question I had asked before several times about his vision....."he doesn't seem to look at things" and sounds frighten him, and car rides are awful (when babies supposedly love car rides". So this pushy doctor turns to her resident she is "teaching" and states, that "this is a medically trained professional with a high risk baby and she is over protective etc and that is that". She then shined a light into his face and he did track the light...and she pronounced "normal".

Well, the resident then stayed with me in the room and examined my son, and tried to engage him with eye contact and of course he couldn't see her face clearly and ignored her.
She did the doctor things, and left, and I started to dress him and leave. As we came out of the office the young resident handed me a phone # to a pediatric opthamologist and strongly recommended we get there ASAP. She took my hand and said:
"I agree with you, he is fine in every way, but his eyes are not right, and you need to see Dr. M ASAP. Which we did and Dr. M fitted him with glasses immediately. My son had a severe form of congenital myopia, and could not see past 8 inches according to the specialist. I was so insulted and disappointed and angry with the primary doctor. It took a student, to get confirmation for him and his vision problems! (Early fitting of glasses when needed according to Dr.M prevents developmental failures in babies-- which may be diagnosed with the wrong disorder..most commonly autism!!)

I never forgot this, and medical arrogance is high on my list now to watch for. The best doctors, listen, and observe openly without prejudice... and those are the ones you should look for and stay with!

[elanor]

[Annie59]

AnnieB3, thank you for your offer. I am so very raw right now I am just taking the rest of the week to try to not let the new neuro affect me this way to the point of wanting it to end. I know I dont deserve that.

I went to U of Iowa Clinics and saw the pediatric muscle neuro as that is the only doc left that specializes without traveling which my duaghter told my internist she couldnt do at this point. I could tell my internist who is extremely caring had reservations. First she said we have to see if she will take you and then she said being seen here means they have full record access. Now some doc like my pulmo dont let what other docs say influence him. But this doc sure did. One minute she was in a hurry and shut me down after saying I should take vitamin D and I tried to answer it makes me sick. She responded she never heard of that.

I am getting pieces of reality back that is better than the terrified yesterday. But there still is fear as my breathing is this bad. This ped neuro saying my breathing was part of other things was the real bad part. My daughter said what if my mom stops breathing? She flatly said that wont happen. WOW. That sure means she has her mind made up on something that purely is not true. I have suspected that this new piece I am feeling might be part of the myositis but she didnt even offer that.

This old neuro I saw about me possibly having autonomic dysfunction was brought into the mix. That was bad. That was in January of this year after my internist said I think you have POTS. He didnt do many tests and tried to get me to admit I hyperventilate which would be an anxiety issue and that is all that is going on around the incidents I am having...he said dizziness tho it is far more complex than dizziness. That neuro did use the mental health card tho I told him no one would say I ever hyperventilate. It just isnt something I do. I havent read that docs whole report to this day because I scanned some of it and saw the really of base stuff like this and well it must be my own fault for not drinking enough water tho I tell all my doc if it comes up that I have to do water in a very mindful way as I have sicca.

The neuro said I think you have Chronic Fatig tho I pointed out the thing about that not having a breathing component. But it became obvious she didnt believe me. See the thing with the breathing tests is the Dr W my pulmo says he can eval me be looking at me and assessing me like he did last week. I dont know how she is explaining that all away unless didnt have time to go over everything. When I talk it over with my daughter, the test he did with me laying down trying to breath Jen said he said my diaphragm is not working correctly. This was previuosly confirmed at Mayo. With my mouth muscles weak, doing the pulmo lab high tech breathing test cant fully be evaluated becaue I can nolonger control my cheeks. Thats what affected the last 2. This is why he said he had to do the visual eval.

She said at first that the breathing tests could just as easliy be deconditioning. I know that is not the full story. I dont deny I have deconditioning. But when I tried to tell her what would happen ahd has happened eveh before I was deconditioned it was obvious she had made up her mind and she was having none of it.

I was so sick and miserable and upset becasue Jen thought she would be back in town by 1pm for a meeting at her new job. But they asked us to go to lunch to give the doc time to see a couple of the kids. I didnt think that if I took too much mestinon to get some relief from all the talking earlier it would possibly make me good enough to mess up some of the weakness tests and my talking strength. She also anounced that she doesnt think I have neuopathy. This is odd because her students went to great lenghts to test my numbness yet when they brought this up she never pursued it.

Gotta go. So tired today.
Again thanks Annie

Originally Posted by AnnieB3

Annie, First let me say that I'm very sorry you were treated in this manner. It is unethical to do that to patients, not to mention simply mean.

I'll just come right out and ask . . . were you seen at the University of MN? If you were, then it was outright arrogance that got in the way of your good care. If you went there, I bet I know who you saw.

It's very sad that prejudice and preconceived notions of patients get in the way of getting good care. It's a reality, however, especially among some neurologists. Our state is notorious for having quite arrogant neuros, even when they end up being completely wrong.

What exactly were the results of the breathing tests? Do you have copies?

Are they insinuating that you are a hypochondriac? Then what was his excuse for your inability to breathe well?

It's probably a very good idea to hole up for a while and recover from this insulting appt. What you really need is a good TEAM of doctors to evaluate what is going on. They might be missing something. Again, if you need any referrals to good doctors, let me know (since I live in MN).

So many of us have been where you are right now. It completely sucks and is unacceptable behavior. Whom else can we get to help us if doctors won't?

It makes me want to scream.


Annie

[MomYaYa]

OMG I am sooooooooooo sorry!!!!! I think we can all share stories when doctors just weren't there for us. I've only been here for a little bit, and don't know everyones stories very well yet, but please don't give up. Is there another doctor you can go to? I know it gets soooooooooo tiring... like I said before, I've been on this journey for 4 years and have seen enough doctors... I swore that at the end of this year I was DONE, and if they didn't figure it out then I quit! Of course, they're finally glomming on to it at the END of the darn year, so next year brings a whole nother round of deductions to be met.

HANG in there. STAY STRONG and know that we are all thinking of and praying for each other every day.

[Annie59]

Thank you all so much. You cant imagine how this has helped me get thru this deeply hard day. Having this much physical pain with it made it worse. I think I mentioned that with 2 docs doing so many of the various pushing and pulling things on my head to prove neck strength I have this horrible headache.

I started to write earlier as it was all coming up again. When at the end I tried to thank you all I was afraid with the rest of what I said it sounded like I might be saying goodbye in the permanent way. I didnt post it. The good piece is that something turned around and I started to write an email to y daughter and stuff came that I hadnt thought of that afffected the doc visit and what happened. I will share some of that with you later. It made me feel better. Putting it to words helped.

I am really beat even with the big nap I had. We had the last day of sun that could be used for shorts/some tanning today. I wished I was well enough to go out into it. WE acutally set a record for Iowa of 68 degrees! Thank heaven I told my landlord not to put on the AC cover for winter as I would have gotten way too hot.

I am so grateful I have found friends here. Kind people who know what this is like and share. Mates in this journey.

Annie59

[shalynn]

Annie, I'm so sorry you were treated in such a horrible manner. I have had bad luck with several neuros. One of the first neuros I saw told my PCP that I needed to be on an antidepressant because my legs were numb! It turns out that I had neuropathy from a bout of mylitis. Another neuro accused me of faking my ptosis! I had to see over a half dozen neuros before I got anywhere. It's hard having to prove yourself when you feel so bad. Anyway, I just wanted to let you know that I can really relate.

Keep fighting for what you deserve!

[AnnieB3]

Annie, Have you ever had a brain/spine MRI?