Tool Kit

Tips and advice for those suffering from undiagnosed symptoms or chronic pain on how to cope and work with your doctors to find answers.

Things to do when undiagnosed

Being in pain and undiagnosed can be scary. Here are 13 tips on how to get a correct diagnosis, how to use the Internet to aid diagnosis and how to cope with the uncertainty, by someone who has been there. -Jayne Rachael

Click here to learn “How to Write your Own Medical History and Find the Right Doctor” – Steven J. Bigelsen, MD

Click here to learn “How to Best Communicate with Loved Ones Experiencing Chronic Pain” – Jayne Rachel

1.

First try all traditional methods. Only try to do your own research if you are truly at a loss and have tried several doctors. The truth is doctors have gone to medical school and have had extensive training that the rest of us don’t have. Doctors are therefore the best bet for most medical conditions, especially common conditions they see every day. When you are coming up empty handed, go to the best, which means doctors with good reviews and stellar experience. See several doctors in a variety of specialties before you delve into the world of Internet research.

2.

Keep a journal of symptoms and track the food and medications that you are taking. Try to see if there are any patterns in your symptoms. Are they worse at particular times of the year or day? Do certain foods, medications or activities make things better or worse? This will be important information to share with your doctor.

3.

Sadly, doctors often don’t have enough time to listen to all of your symptoms or research anything rare. When you have something rare or not yet discovered, you may feel like you have no choice but to become your own detective. Before you do this, first ask yourself whether you really are the type of person who should be doing this type of research. If you are neurotic (and you know if you are) and you think every cough is a sign of lung cancer, or any arm that has fallen asleep is a sign of MS, this type of research is not for you. See if someone less neurotic in your life can do it for you such as, a friend, spouse or other family member.

4.

If you decide you are up for it, write down all of your symptoms and then start googling. Start with the rarest symptoms first. If you put something common in, like fatigue or achiness, you will diagnose yourself with everything from arthritis to cancer. Give greater weight to more reputable places. You may want to start with PUB MED, which is a site geared for medical experts and has empirical articles. Next try patient sites like WEB MD and the Mayo Clinic. Sites like these are going to be more trustworthy than a site by one doctor or other professional out there on their own. Try different combinations of your symptoms and see what you come up with. Remember that not everything may be related, as you could have more than one condition. I diagnosed my Myasthenia Gravis (MG) by searching hoarse voice and weak legs. Try to come up with a few different possibilities that could match your symptoms. Do not freak out if you find something scary! Odds are high that many of the things you come up with will be wrong.

5.

After you come up with a few possible diseases/disorders, start looking on patient chatrooms about them. Do some of the patients’ postings sound like things you have experienced? I suggest looking at patient websites in addition to the respected sites recommended in suggestion #4, because sometimes the patients’ collections of experiences are ahead of medical knowledge. For example, in my case the patients on Internet support websites knew that Myasthenia Gravis (MG) can cause pain and achiness long before any studies were done to demonstrate that. (Doctors and researchers thought that MG only caused weakness, not pain.  Since I always complained more about pain, I wasn’t able to get correctly diagnosed. However, patients who experienced MG understood the obvious; that when your muscles are tired and overworked, you get sore and achy.) Additionally, patient websites can do a better job at describing what the pain feels like.  If Internet posters are describing symptoms that sound actually like yours that could be a potential lead for a diagnosis.

6.

Start printing out your research and articles on the few different diseases/disorders you think you might have to take and show to a doctor. If scientific, empirical articles exist on that illness, print those out and put them at the top of the pile, as doctors give scientific studies more weight. Highlight the sections that pertain to you.

7.

Once you have narrowed down the possible diseases you might have, go to specialists who deal with those particular disorders. If there are tests, insist on getting them done. Keep in mind that you might not be correct, but it’s worth getting the tests done to cross it off your list. Show the doctor the research you have found (again emphasize the more scientific articles if possible.) If the doctor hates that you are bringing in your own information/research, find a different doctor. Some doctors are more open and willing to partner with patients than others.

8.

To convince the doctor to at least run the tests, it may help to list your symptoms that match the diagnosis first, instead of focusing on the symptoms that bother you the most. For example, for years I went to doctors complaining of neck, back and head pain, and it got me nowhere. But after researching and figuring out that I probably had MG, I would begin my doctor appointments by explaining that I felt that my legs and arms were weak. This made them much more likely to suspect MG. (MG is known for causing weakness, not pain. As mentioned before, using weak muscles can obviously cause pain.)

9.

It’s a good idea to bring someone to the doctor with you, regardless of whether you are going in with your own possible diagnosis or not. If you can find someone with some medical knowledge, including a friend or family member who is a doctor or nurse, that’s even better. It’s helpful to have this second person in the room with you, because they can take notes and help you remember what was said. As a patient with an undiagnosed illness, you may find doctor appointments stressful. Therefore, it is helpful to have a calm, supportive person with you who can give you an honest opinion of the doctor and the visit.

10.

If the first doctor blows you off, get a second, third or fourth opinion. Just like is true in any profession, some doctors are better than others. If your local doctors aren’t helpful, see if you can write to a top specialist at places like the Mayo or Cleveland Clinic. You can write a letter to some of these doctors in advance, asking them if they have any ideas and if they think it would be worth you traveling to see them.

11.

Keep in mind that your self- diagnosis might be wrong. I was convinced I had many other diseases that I did not have until I stumbled onto MG. If you are going to good doctors, they should not just tell you that your diagnosis is wrong, but they should be able to give you some ideas of what else could be the problem and what next steps to take. This is where going to good teaching hospitals could be helpful. Private practice doctors who spend five minutes with you won’t be good at coming up with rare diagnoses.

12.

Make sure you have a good therapist or psychiatrist. Yes, mental health issues could be playing a role! It does not mean that your problems are all in your head. However, the stress of having undiagnosed chronic pain is traumatic, and it helps to have a trained professional to talk through it with. Additionally, the stress of being ill can cause difficulties with sleep, which could make the pain situation worse. Psychiatrists may be able to prescribe some medications that help with both pain and anxiety. It also helps to be able to tell your doctor that you are getting mental health care and that your therapist believes that there is an undiagnosed medical component when the doctor tries to tell you it is all in your head. It could even help to have your therapist/mental health therapist call or write a letter to the medical doctors you are seeing.

13.

For more support, join patient chatrooms and support groups. Although it’s fine to lean on family members or friends, they can’t know what you are feeling. They aren’t in your body and haven’t experienced it for themselves. Unfortunately, if you look fine, they may think you are exaggerating, which is terribly frustrating. If you can, find people online who have gone through something similar, as they can support you. When I had my terrible reaction to the antibiotic Levaquin that lasted several years, I found three different people who had similar reactions to mine (two from online support groups and one from a friend of a friend.) I would rotate calling, messaging or emailing them when I started to panic that I was never going to get better. Hearing how bad they once were and how they made almost a full recovery made me feel a thousand times better and always got me out of panic mode. Talking to a family member who didn’t understand always made things worse. Figuring out who can relate to and support you and who can’t is essential. If you are panicking frequently, try to rotate who you lean on, so no one particular person gets burned out.