Advice needed on misdiagnosis by HMO
 

hi everyone...

i have a huge problem on my hands, and none of us needs another problem in our lives, do we?

i have been denied care by my HMO for mTBI and PCS...they are refusing to provide care as the diagnosis by one neurologist states it as a somatism...it's all in my head...he is 30 years old, has stated he never treated anyone with an injury to a brain stem, has told me there are no specialists i can see and that he stands by his diagnosis and that he is qualified to help me...

the scheduler at the office, when i said i was seeking a 2nd opinion from another neurologist told me she thought the 30 year old was "brilliant"...

well, he spent all of 20 minutes with me, ordered not a single follow up test...wrote me a prescription for divalproex 250 mg...then told me via e-mail to double it to 500 mg, and i tried it and had a bad experience and went back to 250 mg...he proceeded to send me a HUGE bottle of the stuff after i told him i could not tolerate it...

my symptoms are sever and match a diagnosis of TBI and PCS...

i have letters from 3 highly trained, highly educated, highly experienced professionals that say clearly, in writing, they believe an injury occurred in my brain stem and / or i have a symptoms related to PCS...

i am frustrated beyond belief, life is a complete struggle on a daily basis and i am unable to function at all outside of my dark, quiet and slow home...

yesterday, i had another doctor at the same HMO refuse to discuss medicine, diagnosis or treatments, and suggested nothing except "leave and get other insurance"...he also stated (loudly, while typing and never looking at me) that we had 20 minutes, to speak up and to go fast...of course, i can do neither...it was horrifying to receive such treatment...i got up and asked "what the fxxx is wrong with you?" then walked out the door...

i believe there is actionable legal issues, and the other party will uncover the e-mail i rec'd from the HMO neurologist that clearly states "i do not believe you have a brain injury"...

i have another appointment with a different neurologist in the same HMO office as the one that does not believe i have a brain injury...for one doctor to change the diagnosis of another, in the same office, seems unlikely...that appointment is one week from today...

this is very serious for me, i do not know what to do...i am petrified that not only will i be blocked from further treatment, that any legal action i take will stop in it's tracks quickly...i am nearly complete debilitated and have been for 6 months...

my wife suggested that i will make a list of my symptoms (extensive and 100% accurately portrays mTBI and PCS) and the letters from the other professionals outside of the HMO...

has anyone experienced this harsh treatment and been denied treatment by an HMO then had the diagnosis changed?

what to do?

i am desperate here...

thank you in advance...God Bless...

brainstemmed,

There is a common problem with doctors. They do not recognize a diagnosis for which they do not have a treatment.

It is like going to an orthopedist and complaining. I lost my arm due to an accident with a circular saw, I want treatment to get my arm back. The ortho will just send you away. In a rare occasion, he may refer you to someone to help with residual nerve pain or a psych who can help with phantom limb syndrome.

Neuro's have little to no skills treating concussion injuries because there are very few things that can be done. The brain needs to heal itself.

You sound like you may present to the doctors as a cyber-chondriac. That is a person who knows all the symptoms and diagnoses from reading online. Doctors often react negatively to such patients.

Have you been through a neuro-rehab clinic for diagnosis and possible treatment ? That is likely your best option.

What symptoms are you wanting treatment for and what outcomes are you expecting from such treatment ?

Go ahead and make the long list. Please try to leave the emotional angst out. It can easily sidetrack many of us as we try to help. As the saying goes, Just the facts, ma'am.

For example,

Insomnia, I need help getting better and more restful sleep

Word finding, I need to learn skills to help with word finding

Every concussion / injury symptoms needs to be considered individually. There are no broad treatments.

Why are you taking Ritalin ?

Have you been through a neuro-rehab clinic for diagnosis and possible treatment ? That is likely your best option.

What symptoms are you wanting treatment for and what outcomes are you expecting from such treatment ?

Please try to leave the emotional angst out. It can easily sidetrack many of us as we try to help. As the saying goes, Just the facts, ma'am.

Why are you taking Ritalin ?[/QUOTE]



Mark:

i have not been to a neuro-rehab clinic...i did not know of such a thing until reading about it here, and none of the folks at the HMO have come close to that recommendation...

i have also spent nearly 15,000 out of pocket in the last 6 months while my income and savings are down to almost zero...i simply cannot afford expensive treatments outside the HMO...i thought i was covered, but apparently not...

of course, i will be changing to another insurance the 1st of the year so that i might be covered by a plan that knows how to deal with brain injuries...

i have been told over and over there is no specialist in this HMO that deals with brain injuries...i must deal with neurology and they feel they can assist me, when we now know they cannot...and will not...

since each brain injury is unique and this is new to me, i am seeking a plan that will benefit me specifically that will promote recovery...

i am seeking relief from any symptoms i can...nausea, headache, memory loss...all of it...

i am unsure what to do...all i have done to care for this is what i have been directed to do by my vestibular therapist that is outside the HMO, she has been amazing, understand and compassionate.

the HMO neuro prescribed Ritalin when i asked for help with unclear thinking and now he will not renew, and did not make a different suggestion, so hopefully next week i can get something from the new HMO neuro. when my prescription runs out, i will be non-functional once again...unable to work or even get up and move around, so i am hopeful they have a reasonable suggestion.

thanks for your help.

brainstemmed,

I think you are asking for doctors to do things that they simply can not do. There is no simple treatment, especially for memory issues.

The theme around here for years has been "Learn work arounds and accommodations." We have been remiss to not promote this concept lately.

I have memory tricks I use for my memory dysfunctions. I have very poor memory skills but go on with a functional life.

Nausea is treated individually. It needs to be properly defined as nausea and not another gastric distress issue.

Where do you live and what HMO are you in ? There are different services available that many do not know how to access.

What diagnostics and therapies did you spend $15,000 on ?

I spent over $18,000. About $10,000 was worthwhile. The rest was money down the drain. My HMO was not willing to help either. I was labeled somatoform disorder, too.

Keep in mind that there are brilliant doctors with outstanding skills in a specialty. It is extremely rare to find a neuro or any other doctor who is knowledgeable with mTBI/PCS, especially head injuries with no imageable damage or extreme symptoms. NeuroPsychologists often can diagnose the functional limitations but even they often list a non-organic cause.

Have you read the tbi survival guide www.tbiguide.com ? It is excellent. The links at the bottom of the vitamins sticky post are a wealth of information.

Do not demand a recovery plan. Instead, ask for help managing your symptoms so you can lower your stress so natural healing can take place.

We are here for you.

My best to you.

update...
 

what a battle this is...

i sought a 2nd opinion from a neurologist at Kaiser Permanente in Denver...

the first neurologist is 1 year out of residency, therefore, only 1 year of practice...he told me that since i did not lose consciousness, it is not possible to have a brain injury...his diagnosis is somatization disorder...basically, all my symptoms are psychosomatic...

2 days ago, i saw another neuro at Kaiser with 23 years experience...she said no way the symptoms i am having could be a brain injury (naseau, cognitive problems, tinnitus, on and on)...

she also told me there are no foods or supplements that she will recommend to heal my brain...that is not my problem...

i would agree my injury is uncommon...but my symptoms and my debilitation happened instantly upon receiving the final chiropractic adjustment...it send me to the canvas hard...she said there is no way that is possible...she would not allow me to show her what the chiro did, she was not interested in seeing it...

she verified for the millionth time, that Kaiser Permanente does not have anyone that specializes in brain injuries, but that it did not matter since that is not my problem...

she referred me to a psychiatrist for an appointment tomorrow...i am hoping to find some meds that will help me get thru the day...each day is so very difficult...a lot of anxiety, anger, depression and frustration...almost all of this is my frustration with an improper diagnosis, therefore, almost ZERO real care for a brain injury...it is like i am living a very bad dream...like drowning and no one can hear the screams...

she did however, provide a referral to National Jewish here in Denver to a neuropsychologist for testing, but most likely that will not be for 6-8 weeks...but at least it is a start...

to reiterate, i have had 3 highly trained, highly specialized, highly experienced medical professionals outside of Kaiser send to me, in writing, that i suffered a series of increasingly significant brain stem concussions over 15-18 months via the chiropractic adjustments done to my upper cervical vertabrae using the Blair Technique...

i am broke and desperately seeking the proper diagnosis so i can get the proper care needed, but i believe it is time to cast aside Kaiser Permanente and figure out how to pay for the much needed assesments and treatments to move me towards recovery...my zero balance on my only credit card is about to go away for a while...

if anyone has any experience within Kaiser Permanente in Denver, your comments would be appreciated...

if anyone knows of experienced, compassionate and knowledgeable medical professionals in the Denver area that can help, i would be very grateful...

Brainstemmed