NEEDED: How to Get Appts with Experts Info

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Postby georgiagal » Fri Feb 22, 2008 3:03 pm

Wow, HC -- so soon after the terrible storm of new medication and you're ready and willing to put togeher such valuable information!

I think it's a wonderful idea and would certainly help a lot of people. Let me know if you need help!

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Postby SMLady » Fri Feb 22, 2008 4:08 pm

We already have a very knowledgable person on the site - Razzle - who has listings of specialists all over the place. If you will notice, she is always quick to provide people with a listing of doctors in their area.

Thanks Razzle!
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Postby cash71 » Fri Feb 22, 2008 4:39 pm

I'd be happy to offer tips, too. Each of the experts have some different quirks and those of us that have been to them have some inside info that we can share.

Great idea,

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Be Proactive

Postby flygirlkris » Fri Feb 22, 2008 7:07 pm

Great idea! I guess that my best advice is to be proactive as a patient, stand up for your rights and double check everything.
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Another Thought

Postby flygirlkris » Fri Feb 22, 2008 8:52 pm

I ask for and keep copies of all of my doctor notes. They are a great reference to go back to and to have to pass along to other doctors as needed! You have a right to copies of your own medical information. Be an advocate for your own health! Since so many doctors don't know much about us we have to educate them!

I recently went to a new physical therapist for my bladder and bowel issues and she didn't know what SM was. However, she totally impressed me b/c she didn't act like she did. She was upfront and said she didn't know. Much to my surprise I received an email from her that night about the research that she had done on the internet about SM and my condition! I was very impressed with that! She is a great partner in dealing with my condition! Wish more of the medical professionals were like here!!!
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Postby Amy Joe » Sat Feb 23, 2008 4:55 am

One very important item for me is 2 appointment books.

1 for me and 1 for someone you can trust to remind you.

With my memory I forget dates very easy, I have gone on wrong dates and have completely missed appointments and I have gone to the wrong dx.

I always ask for a 24 remind call but do not always get it.

I put appointments in my DH PDA phone. This has helped me alot.

I have to write what ist for, what hospital (floor ect).
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Postby PittyPatty » Sat Feb 23, 2008 8:30 am

I love this idea HC! I'm so inexperienced with dealing with anything like this, and my eyes have been opened to what a challenge it is for everyone to get to the right doc.

I have many other general questions too that I search for tips on, such as:

- what types of doctors to see and the roles of each (right now I am clueless on pain management - my PCP only prescribed temporary relief and gave no advice on how to get it for the long term). and who should manage care locally for the long term after you've seen one of the specialists. How to find that more accessible Dr. that maybe isn't an SM/CM expert, but is willing to oversee things.

- what you need to bring to the appt. (films, records, medications, etc.) and questions to ask the specialist

- what types of tests to expect and what they are for and maybe some tips on making the test easier (request an open MRI, EMLA cream before a LP, etc.)

It would be so great to have all of this type of information in one place!
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prescription refill

Postby razzle51 » Sat Feb 23, 2008 2:26 pm

This another good subject. People that have insurance that have prescription programs should check out mail order prescriptions . It is soooooooooooooooooo much cheaper . especially for long term medication. yu have a co-pay for ex: Generic drugs would be $10.00 , 90 DAY SUPPLY WITH 3 REFILLS . 3months for $10.00 . sO ALWAYS check and see if you have a mail order prescription program. When your year is up Dr. Faxed in the slip and you are set for another year.
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Postby streetsense » Sun Feb 24, 2008 10:53 pm

Know as much as you can about your condition(s). This includes knowing what the typical symptoms and treatments are, while knowing where the symptoms yand treatments ou are having differ.

Be cautious how much you convey of your knowledge, though. You want the doc to have a clear idea of where you feel you're at, but you want them to be able to come to his/her own conclusions about your situation. Give them a chance to use their expertise to evaluate your situation, since "knowing" what conclusion you're seeking can throw them off in using what they know to help you.

If you don't get a result that satisfies you, there is almost always another specialist to consult. Don't feel it's the end of the world if you don't hit it off well with a particular doc or they're having a bad day. SM and CM are difficult conditions to fully apprehend for all but the small handful of those who specialize in their care. If the doc seems to be missing the point about something, gently bring up your concerns.

Finally, clearly articulate what you goals are, after giving the doc a chance to address them. Be polite, but insistent, if somehow you end up with a result that doesn't meet your needs. Be certain what the follow-up is supposed to be, for instance, to schedule a return visit, how you'll receive test reports, or whatever else that requires your action. This is one place, especially if you're in pain, where having a trusted and supportive companion along can be helpful.
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Postby dtyree » Mon Mar 17, 2008 10:02 am

I'm tee totally confused, but what's new?

To make an appointment , I usually call and set a time. At the first meeting, things are discussed and we go from there. Then get the ducks in a row. What am I missing?

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Postby dtyree » Mon Mar 17, 2008 11:51 am


Communication is an art form, ain't it. I Keep trying to hone that one all the time.!!!!!!!!!!

Been called a "walking medical dictionary".
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Postby lainiek » Mon Mar 17, 2008 12:34 pm


Just to clear up some info about Dr. Oro's office from your post:

Stacey is not a nurse -- she is Dr. Oro's medical assistant. She does book appointments.

Ruth Taggart is Dr. Oro's nurse. She is listed on Dr. Oro's web site as the person to contact to schedule a self-referral appointment. However, if a physician is referring a patient, they list Stacey's email as the contact.

There is a scheduling information page from Dr. Oro's site, but the link doesn't work if I copy and paste it. But you can acess it from the site map:

Go to Dr. Oro's site -- click on the site map and at the bottom under "Contact and Travel" there is a link for "Scheduling." Click on that link, and it will bring you to the right page.

I have found Dr. Oro's office very straight forward and responsive. I think if people follow the instructions from this "scheduling an appointment" page, they won't have any problems.

This was my own experience:

I was a self-referral. I emailed Dr. Oro's nurse (someone who isn't there anymore -- Ruth has taken her place). I gave her all my pertinent info, like insurance, brief history of my SM diagnosis, contact info. The nurse emailed me back the same day to call Stacey to set up an appointment.

I called and left a message, and Stacey called me back within a couple days.

They mailed me health history forms to fill out and bring with me to my appointment. I did not send my MRI films ahead of time but brought them with me.

But, I know others have sent in their MRI films beforehand. Maybe it depends if you're going to be traveling to see Dr. Oro. I didn't have to travel to see him. But I'm sure his office staff would let you know if you should send your MRIs in before the appointment. Also, either a CD or films is acceptable. I had some MRIs on film, some only on CD and brought both.

Dr. Oro's office also has a web page about basic contact and travel information: ... tment.html

When you arrive for your appointment, you'll first see Stacey, who will just take your BP and temp, maybe your weight. Then, you'll see Ruth. She'll go your health history form and maybe ask other questions, or like me, she did a Beighton scoring test because I'm hypermobile.

Then, you'll see Dr. Oro. He'll go over your health history, ask you to descirbe your symptoms, etc. He'll do a neuro exam, and then at some point, you'll go into his conference room to go over your MRIs.

There is another NS in Dr. Oro's office, but I think they do not share patients, so if you make an appointment with Dr. Oro, you will see Dr. Oro.

Last edited by lainiek on Mon Mar 17, 2008 12:52 pm, edited 2 times in total.
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Postby docrx » Mon Mar 17, 2008 12:48 pm

Hey HipCrip
I will start with Dr Oro since this is the only experience I have.
Step 1. I called his office and was told I would have to talk to Stacy.
Step 2. I was connected to Stacy's voicemail and left a message.
Step 3. Stacy called back and did a "phone interview" with me.
Step 4. AFter the interview she asked me to send her my films.
Step 5. About a week after Dr Oro receiving my films Stacy called and said he would like to see me in the clinic for an appt.
Step 6. I made an appt- it was about 8 weeks out. I was offered one about 6 weeks out but couldn't take that one due to prior engagements.
Step 7. I am sending Stacy more films- Dr. Oro could not open my CD. So send the FILMS not the CD!
I would also like to add that Stacy was very very nice and helpful!

Hope that helps Hipcrip!
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Postby docrx » Mon Mar 17, 2008 12:54 pm

Oh and I was a self referral. I believe Dr. Oro accepts both. Just to add he does accept images on CD but he could not open mine for some reason. So it is best to just send the actual films if at all possible.
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Postby lainiek » Mon Mar 17, 2008 12:57 pm

Hey HC,

It's really nice that you're doing this for folks. I'm sure it will help people a lot. :)

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