<p>I was diagnosed with a chronic disease a few months ago and am taking a combination of drugs to control it. My specialist gave me a few dos and don’ts the day I was diagnosed, but I find that I run into questions a lot. These are mostly related to drug interactions with over-the-counter medications, but sometimes I just want to know if an activity that I’d like to do could cause complications and worsen the disease’s symptoms.</p>
<p>My first inclination is to look on the internet. The disease is rare, though, so there isn’t a lot of specific information that I’ve been able to find. I end up calling the specialist’s office, leaving a message, and someone gets back to me hours or even days, later. I almost always would like the answer asap, and waiting days just isn’t acceptable.</p>
<p>I am new at this, and I must be missing something obvious. Is there a web site that I’m not finding, or magic words to tell the receptionist at the doctor’s office? Should I be calling my PCP instead of the specialist?</p>
<p>Calling your primary isn’t a bad idea. You could ask him/her to let the specialist know that you need more timely responses. Or you could ask for a referral to a different specialist. Personally, I wouldn’t want to put up with a doctor who consistently delayed responding to my legitimate concerns, and that seems to be the pattern here.</p>
<p>I’d stay away from the internet. My experience with online medical info is that it’s either so general that I already know it, or so specific that it’s irrelevant to my case – useless either way.</p>
<p>There are support groups and medical education classes for many conditions. Check with both doctors and with your hospital.</p>
<p>Make sure that your PCP knows about your seeing the specialist and whatever treatment you are doing from the specialist. Also, what prescription and OTC medications you are using.</p>
<p>Internet? There is useful information, but there is also garbage (e.g. vaccine-autism conspiracy theories).</p>
<p>OP – Even some pretty rare diseases usually have at least one organization devoted to that disease nationally – check and see if you can find one with a 501(c)(3) designation (meaning the IRS has approved it as a charitable organization) and look for one with well respected researchers in your disease on an advisory board. (Typically researchers affiliated with medical schools.) </p>
<p>The National Institutes of Health [NIH</a> - Health Information](<a href=“Health Information | National Institutes of Health (NIH)”>http://health.nih.gov/) also has a health information section where you should be able to put in the name of your condition and see very reputable articles on that condition. </p>
<p>indiana, does your insurance have a nurse line? That could be a good resource if they know about your condition. Many of them are open 24 hours a day. They’re registered nurses and they have information on chronic health conditions and help people to better understand prescriptions and over-the-counter medication. Might be something worth looking into. Can’t hurt.</p>
<p>Thanks for all the great ideas! The nurse line wasn’t any help since the nurse couldn’t find one of the prescriptions that I’m on in her database, but I found a lot of good information at the NIH site linked above and the pharmacist should be a good resource – and open on Saturday.</p>
<p>One help I have found on the internet is yahoo groups for particular conditions, if yours falls under an umbrella which is covered you could have an excellent resource to learn about things that others have already discovered and even compile a list of questions for your specialist which you could ask at an appointment, before the situation is applicable.</p>
<p>I agree that pharmacists are EXCELLENT resources and FREE! They receive a lot f good training. Beware that on-line resources can be good and bad, even if they are a 501(c)(3) non-profit. I like resources that are put out by governments, generally designated with a .gov at the end and tend to find those more accurate and reliable than others.</p>
<p>Good luck! If it’s respiratory, National Jewish Health has a lot of excellent resources. If it’s cardiac, Cleveland Clinic is very helpful. If it’s multi-system, it’s somewhat more challenging, but a lot of the larger places, like Mayo and Johns Hopkins and Kaiser have some pretty good info on a lot of health issues & conditions.</p>
<p>If you want to list the condition, or at least the system(s) affected, we might be able to make better suggestions on resources.</p>
<p>I generally check MayoClinic.com and WebMD to start with. There’s also the National Institutes of Health ([National</a> Institutes of Health (NIH) - Home Page](<a href=“http://www.nih.gov%5DNational”>http://www.nih.gov)) and the Center for Disease Control ([Centers</a> for Disease Control and Prevention](<a href=“http://www.cdc.gov%5DCenters”>http://www.cdc.gov)). </p>
<p>You can do a Google search on your illness or on the meds, just look carefully at whose website you’re reading. If it’s a company selling products (vitamins, natural remedies) or a self-help person, etc, take everything you see with a huge grain of salt - or skip that page.</p>
<p>A quick update from OP: I finally got through to my doctor, and she pointed me to an online resource: [UpToDate</a> Inc.](<a href=“http://www.uptodate.com%5DUpToDate”>http://www.uptodate.com)</p>
<p>She sent me a pdf with content that she can access with a subscription, but there is also a “patient” level of content that is available free. The patient information was more detailed than the page I found at the NIH web site, which was more than I’d found anywhere else, but it still didn’t have any information on the obscure medication she has me on. I told her that I’d spoken with my pharmacist and she said that was ok, but that I should call her office if I have any questions. sigh She is part of a research hospital and I wonder if that makes a difference.</p>
<p>A friend with a different condition recommended the groups at healthsharegroups.org (since I couldn’t find an appropriate yahoo group). I’ll check that out, but I’m a little wary.</p>
<p>Thanks again for all your responses. I really appreciate it!</p>
<p>Find the organization (voluntary health organization) for your condition. They will likely have a medical advisory board consisting of medical experts who have extensive experience with patients with your condition. This experience that they have is priceless! If it’s anything like the VHO I work with, the doctors will be more than happy to go the extra mile to help you sort out meds.</p>
<p>For the condition I work on, our doctors and our information resource center (800) has the best information specific to the disorder.</p>
<p>Another good source is NORD (National Organization for Rare Diseases).</p>
<p>OP: Glad you’ve been able to find some resources.</p>
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<p>Online support groups can be a wonderful way to vent, to get info that the doctors won’t tell you, and to pick up some tips & tricks. They can make you feel that at last, you’re not alone, there’s someone who understands. At the same time, you’re right to be a little careful of what you read there. People may be misinformed, may be under different treatments than you are, may have different histories and drug factors and allergies – all kinds of things that make it important to take online advice with a grain of salt. </p>
<p>Learning to live with this will be a process and you’ve taken some positive steps. Best of luck to you!</p>
<p>UpToDate is a great resource and I have found it generally accurate and helpful. Glad it has helped you. Hopefully, the doc can give you more info about the meds you’re taking, benefits & possible side effects/interactions. Communication is key!</p>
She is part of a research hospital and I wonder if that makes a difference.</p>