Trapped in the middle
 

:thud::thud:OK - I need help! Im caught up in a Doctor ego Bashing Party which I had nothing to do with except be the patient and have been following all docs orders.

Neuro would "prefer" to label me with all sx as psychosomatic-teehee-I know we've all gone through that dx before-so have been seeing a therapist for almost 2 years now for Neuro's orders. Therapist and Psych both agree I am NOT having psychosomatic symptoms...

So now Primary sent me to a Urologist who has now confirmed I DO have MS and have lost all bladder/bowel sensations.

He wanted Neuro to do a spinal who has "obviously refused" as he NOW believes I have MG-definitely occular MG with eye doc confirmation.

So, neuro is under fire by other docs in community for having refused my being evaluated by the MS specialist at KU Univ 1-2 years ago when the new internist who came to town from SW Med Univ in Texas had sent me to see the MS specialist without HIS knowledge. He put a stop to my being evaluated and the next thing I knew the new internist was fired!

So, neuro is now sending me to KU to see the MG/MS specialist in 2 weeks. I assume to prove his point that I ONLY have MG.

I told my therapist that the funny thing IS that I will probably end up with MS/MG AND Lupus! So ALL the docs will be right in one way or another! LOL

BUT today I have to call this neuro and get him to "explain" to Medicare why I have to travel more than 100 miles from home to be treated!!! Like he is going to ever want to admit that it is beyond his capabilities to treat me!! If he doesn't file this form then I wont get transportation or the lodging as I was planning on...

I just cant wait to see how this will all unfold. I had sent the form to my primary but apparently the "team" of docs want this neuro to fill out the form.

Sounds to me like they are forcing him to eat humble pie before them...ugh.

I hate battles...

Anyone got any suggestions? I just want this neuro to back off gracefully but I got a feeling he is going to back himself into a big corner with a lot of folks about to pounce and gnaw him into oblivion.

I'm so melodrama!:cool:

I need lots of hugs!:o

My best advice is to go over the neuro's head and speak to his NURSE! the office manager. This way you avoid hearing the attitude of the MS doc and his opinion, and can get the nurse to fill out the proper paperwork to get you treated. PLEASE! dont bash the MD to his nurse. She will be feircely loyal to him, and will make it hard on you if you spit venom at her about her boss who signs her paychecks. Just let her know that you understand he is incredibly busy and you dont wish to bother him anymore than you already have, but really need this form filled out to accomdate HIS wish that you see this special MD in another city. Give her your deadline, and request, and leave it in her hands. Dont give her your real deadline! give her one that is well before your trip. Let her know that the papers MUST be turned in before the trip so financing can be arranged. Dont be pushy! Office managers are quite busy, and happy to help, but are more helpful to nice folks than pushy ones. (arent we all that way?)

Good luck! I hope you can get real answers. its amazing to me that you can get 10 MDs in the same room, at the same time, and get 10 different answers! All they want to do is strut and crow about their discovery. They all want to be published in those medical journals as being the one to find the needle in the haystack. Once they cant figure you out, they are quick to dismiss you as a whiner. Sad, but true. I hope you change neuros no matter what. :hug:

Hugs we can do! bet you get alot from this crew.

:circlelove: (((((TRESA))))) :circlelove:

Great advice, Dej...good luck with all of this Tresa...

Thanks guys-I've never been the pushy type - wish I were sometimes!

I did like you said Deja - I just called and told nurse ever so sweetly that the "state" needed the form to be filled out in 3 days (true) so I can get transportation to KC-she was ever so sweet back.

I prefer to keep all bridges intact-if at all possible!:p

what a mess. i hope you're collecting copies of all test results and copies of your mri's, if you had them. this will all be helpful to the next neuro you find.
and, i hope after all this that you find one willing to work with you for your own benefit.

any good dr needs to validate what their pt is saying and be part of the medical team of which YOU'RE the head.

don't stop advocating for yourself. and, i'd get your psych and therapist to write letters documenting that this is NOT in your head.

you might even want to get another neuro opinion before you're labeled with something you don't have. just a thought.

good luck.

Hurray! you will quickly find the MD doesnt run his office, that nurse manager does, and she is the grease that keeps ALL wheels turning. She can speed your papers thru, or she can slow down and simply take her sweet time getting to your case. My mom always takes some form of cake or goodies to the nurses in the office, because she knows those are the girls that keep that MD going. They LOVE her! she is first in line to get her stuff taken care of, and they volunteer information to her about more services she is entitled to.

Im proud of you! :hug:

Thanks everyone - I did get CDs of all MRIs, CT scans Xrays and I even got to look at it all on my own computer-way cool. Then I went n got all medical records of blood work, er visits etc. So interesting to find out ALL that had been kept secret from me.

I DO have hyperplasia of thymus gland with infiltration of various areas. Chronic but mild interstatial lung disease (bulbous disease?), chronic liver disease (hyperlipedimia)Kidney disease (blah,blah,blah), and much more

I was NEVER told about ANY of this!!! Which I am not faulting the docs for as I am to have absolutely NO STRESS in my life - I am supose to be living in a bubble!! Haha.

Stress will affect seizure disorder which in turn affects the autonomic and can drop me in a minute( by affecting heart or lung functions). Neuro was really scared for me. A NY Med Neuro-once head of neurology dept. I was diagnosised by 4 yrs ago.

The new neuro I am going to see is from SW Medical Center in San Antonio and has specialized in MG and MS for over 35 years. I expect we will speak the same Texas lingo twang! Im looking forward to seeing him as he will know the docs who had treated me in Texas years ago.

I cant wait to get a diagnosis and get some treatment going-esp for the MG. Mestinon has been a huge positive affect already for me.

Its just time - seeing as I have now lost bladder to MS per Urologist.

Great news is that my son is about to have his first child (boy) this Dec 1 and my beautiful grandaughter just got chosen lead role (CHristine) for the opera - Phantom of the Opera-YIKES!!! She looks just like the girl who has that role in the movie - but of course-she sings it far better!!!LOL.

Im so nervous and excited for her - she will be absolutely stunning in the performance. And, what a life she will have - singing opera.

So, Ive decided NO surgeries until after her performance this Feb 3-6. Then - do to me what you like:D