Seeking medical help

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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BIGJAVSMOM
Posts: 503
Joined: Tue Apr 12, 2005 4:11 pm

Re: Seeking medical help

Post by BIGJAVSMOM »

Hi Kissygoose.
First of all congrats on your twins. I am not injured, but my one year old son is. I do however, have insurance experience. From what I read, I am assuming that you have an HMO not a PPO. I would try to find another doctor for general care, like a family practitioner. But before making an apppointment, talk to the people at the office and try to talk with the doctor. Find out if they will give you the referrals you need and if they will really listen to you. Some docs just need to realize that tests don't mean everything. No one knows your body better than you. So keep on trying and best of luck to you. Also- for the tummy troubled twin... Have you tried all the different formulas available to help with gastro problems?
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Seeking medical help

Post by Kath »

Christina
I think its time to change doctors. Does he have old emg's to compare to? I don't have nerve damage on the unaffected side but I have overuse and often burning and stinging for weeks on end... my doctor recognizes that compensation results in overuse and secondary injuries.

I would try to call you insurance company and see if they can help. If he is not a bpi specialist how can he refuse you specialist care?

Kath
Kath robpi/adult

Kathleen Mallozzi
kissygoose

Re: Seeking medical help

Post by kissygoose »

I am going to be changing doctors after I get my gall bladder out and don't need referals for that (very long convoluted story). Unfortunately, the doctors around here require you to meet with them before they decide whether they will take you on as a patient. I've tried asking questions over the phone but they just tell me to wait and meet with the doctor.

As for the current doctor. She's taking the word of the neurologist even though he's not a specialist in BPI. They don't have any old records to compare with because I haven't had one done since I was about 10 and I'm having a really hard time getting anything from that long ago, not to mention my father has no idea even who my doctor was back then.

The neurologist who did my most recent EMG knows very little about BPI I'm sure. The whole time he was doint the test he kept comparing it to the affects of Polio. Neither he or my GP even would listen to me about how my OBPI arm affects my unaffected side. Another problem, I think, is that none of the doctors around here would even know who to send me to.

All my life my parents (father in particular) tried to ignore the fact that I had a "handicap". They refused to even deal with it most of my life and now it's like I'm paying the price for it.
kamren
Posts: 262
Joined: Sun Feb 15, 2004 7:19 am

Re: Seeking medical help

Post by kamren »

I had similar problems when I was first looking for help. My insurance company kept sending me to neurologists who had never treated BPI. I finally stopped going to the ones they kept sending me to, and asking the nurses about them, when they admited the Dr had no experience with BPI, I called the insurance back and told them "No Dice" I not wasting my co-pay on a Dr that doesn't know my problem. The last straw was when they told me to go to one in a nearby town. That they had researched it, and he DID have experience with BPI. When I called and asked about it, they admitted....yes, he has seen 1 patient. 1!!!!!!! At that point I called Dr Shenaq's office. I had decided that it was worth the $ to see a Dr who knew what they were talking about. One of the things I learned was that my insurance didn't have a single Dr that could be considered a good source for my injury. So we started the procedures to have it covered as in network.

See our insurance had a clause that said that if they didn't have a Dr in network for a particular thing, then a Dr out of network would be covered as in network. It took a while, but we did it. They kicked and screamed the whole way, and it was a hassle, but it was worth it.

I am very lucky now, because we have a new insurance provider and Dr Shenaq is now in network, and the hassels are sooooo much better:)

Anyhow, my point is this: You may have to take it into your own hands and push your insurance company. Push hard. It is worth fighting for. You are worth the fight for proper care.
kissygoose

Seeking medical help

Post by kissygoose »

Since I'm having so much trouble doing things like feeding my twins, the ladies in my nursing group are encouraging me to find medical help for my arm. But my doctors won't refer me to anyone who knows what they are doing, especially since the neurologist I saw last said that my EMG tests showed no progression or risk. Every day it seems like I can't last as long as I did the day before. But I can't afford to go to a doctor without a referal. I wouldn't even know who to go to anyway.

How did you go about getting help and picking a doctor that would help?


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