One of the worst times in the life of a multiple sclerosis patient is the pre-diagnosis phase. Symptoms come and go before you manage to see a doctor. You get the feeling that you are not being taken seriously by physicians. You've researched online and self-diagnosed. All you want at this point is the real diagnosis and the assurance that you are not crazy.
On the other hand, you really don't want to her those words, "You have MS."
The process of diagnosing MS can be lengthy.
If you have symptoms consistent with MS, there are steps you should take immediately.
- Begin a medical journal documenting your symptoms. Note the type and severity of symptoms, as well as how long they last. This will be a valuable tool for your doctor visits.
- Make an appointment with your general physician and bring the journal so that you don't forget any details. After performing a general exam, they may be able to determine another cause for your symptoms.
- If your general physician finds no reason for your symptoms, ask for a referral to a well-respected neurologist. Keep up your journal and bring it to your appointment. This will come in handy, especially if you are symptom-free by the time of your exam.
- Be patient. Immediate diagnosis is uncommon. The neurologist will likely arrange for tests such as spinal tap, evoked potentials, and MRI. Ask for copies of all your test results.
- It would not be unusual for some or all your tests to be negative. The neurologist may tell you to make another appointment when symptoms return. Do that.
- If you question your neurologist's diagnosis, or lack thereof, seek a second opinion from a neurologist who specializes in MS. Bring your journal, as well as any prior test results you may have. You can request that your medical records be forwarded as well. Go armed with all the information at your disposal. Seeking a second opinion on a diagnosis of MS is a wise thing to do, and it is not necessarily a reflection on your other doctors.
Keep in mind that there is no single, definitive, test for MS, although the MRI has given doctors a powerful new tool in early diagnosis. It usually requires a series of tests, a review of your medical history, and the elimination of other possible causes, before that official diagnosis can be made.
If you do get that official diagnosis, relief may be your first reaction. Fear won't be far behind. Battle that fear with knowledge. Get educated in the facts of multiple sclerosis and beware of the myths. When searching the web, make sure you get your information from reliable sources. Remember, MS shows itself in many different ways; no two MS patients are alike.
The MS community is a strong one, and we reach out to each another with support and information. Frankly, we don't want any more new members to this club, but if you end up as a part of our group, we'll help you every step of the way.