When your doctor isn't familiar with your diagnosis...

• By Tamyra
• Posted October 30, 2008 at 8:33 am
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Dear Mom of 4,

I have several rare conditions, my doctors don't know why I am still living. I found one internist I keep him posted on everything. When I travel I have a detailed file with all my information. In my cell phone I have emergency information. Emergency personnel know what to look for if they have someone who is unable to respond. My daughter also has a copy of my medical information and is ready to fax it if I am away from my home town hospital. She is also in my emergency list on my cell phone.

As for being your own doctor, people at NORD will understand. You are not alone when it comes to learning about your own diagnosis. I think most of us came here to learn.

Love and Light,
Tamyra

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• By bluenoser
• Posted October 30, 2008 at 8:38 am
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Hi there. I was dx'ed with heritery degenerative neurological disorder. Symptoms include ataxia, depression, poor balance, cordination, among others. Not to many know much about it and the symptoms. I usually have to explain what it is, what the symptoms are and what it's similar to ( MS). It gets frusterating at times. I wish that people in the medical field would become educated on the rare disorders that are out there because they are showing up more and more these days.

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• By aVEDSer
• Posted October 30, 2008 at 10:50 am
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I have taken a red USB drive case with white trim and used white iron on letters to put the letters "Medi" on one side and "Alert" on the other and put medical info on my USB drive.

It contains my diagnosis, health info, medications/vitamins, and most importantly the names of specialists to contact for information. I keep it on my key chain or my purse at all times.

I also have a binder I keep in my car and a card in my wallet that explains my condition.

I have created an awareness postcard that I mail to people in my medical community with a resource list of web-sites to go to in order to learn more about my disorder.

I gave each of my doctor's a binder of information to review in order to better understand my genetic disorder but I cannot say they actually read it.

I attended a genetics clinic and was presented as what I like to call the "lab specimen of the day."
How do you get someone who is in a busy medical office to take the time to learn.

I am willing to keep trying new ways but I am running out of ideas.

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• By Tamyra
• Posted October 31, 2008 at 9:08 am
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It's sounds like you are doing some great things. I never thought of a usb file. I have all my records scanned, all I have to do is transfer them. What a great idea. I understand your frustration of teaching doctors about your condition, what I have found from reading the posts... just one of us would be a new full time job for any doctor. I believe the research doctors are working on us, they just don't see patients because they don't have any good answers yet.

If you don't mind be asking, I have just received a name of a genetics doctor. Do you have a short list of what to expect. I am told insurance doesn't cover the tests or cost. Is it really expensive to see them?

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• By efagan
• Posted October 31, 2008 at 9:28 am
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Lack of knowledge by a health provider is simply unacceptable. In consideration of the number of "rare" disorders, one may not be current on a topic but that is no excuse for not becoming current. If you need to provide information to teach them about VED, put it into a lecture format and present locally with requests that each attends.

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• By aVEDSer
• Posted October 31, 2008 at 11:23 am
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Our insurance covered my office visit, just need a referral from our primary care doc first, and our testing was covered as well.

They had to do three tests before confirming my diagnosis including a very expensive dna test but I never got a bill.

You could call the doctor's office and ask them before scheduling. I certainly asked if our insurance covered the testing costs and they told me they would be covered before I had a biopsy done.

It is a legitimate concern so I was quite comfortable asking.

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• By blessed375
• Posted November 1, 2008 at 6:43 pm
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Having Familial Mediterranean Fever I am in a similar situation. I found it to be helpful to print up a simple, straight forward packet for your doctor to put in your chart on your condition. It is also vital to remind them what tests you may need to have on a regular basis in case they are not familiar with them.

Jen

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• By aVEDSer
• Posted November 2, 2008 at 8:47 pm
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I came up with a sticker to go on my chart, don't know what the regulations about using one are or if they have gone paperless but I used a address label with a medical symbol to print up a medical warning sticker.

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