I was just diagnosed with MS yesterday and I am not sure what to do. My neurologist is recommending we start treatment right away, but I feel like getting second opinion. Some people are telling me it's a waste of time, and some are telling me I would be stupid to proceed without a second opinion.
I have heard and read much about the misdiagnosis of MS and I just want to make sure I am moving in the right direction. Its not that I am in denial. If I have MS, then I have MS and I will deal with it. But I just want to make sure I have received the right diagnosis before I start pumping my body full of drugs. I feel my doctor is competent and she has made me feel comfortable in every way. But still...mistakes are made and I understand that MS can be hard to diagnose.
Everyone around me is hollering advice at me, and I just don't know what to do. Am I crazy to want a confirmation?? Has anyone else had conflictions with this? What do you tell everyone who won't get off your back with their opinions?
I'm so sorry you've been diagnosed with MS, and just yesterday, too. You must be feeling pretty overwhelmed by now, and it sounds like those around you are pretty overwhelmed, too.
Here's what I would do: Step back, take a DEEP breathe, and just sit on it for awhile. How long? A few days, or a week or so. You don't have to make any decision about meds RIGHT away. And consider these things:
What tests were done to get you to this point, and what were the results of these tests? Did you have an MRI? Were there lesions on the MRI, and lesions in the areas most suggestive of MS? Did you have a spinal tap? If so (not all doctors order this), what was the result of the test? Did you have evoked potentials tests (those tests where they glue electrodes to your head and measure the speed of brain waves in your brain to your eyes). What were you told about how that went?
What clinical signs do you have? (Clinical signs are those things wrong that a doctor can test for, in his office: things like balance, strength, vision problems, your walking, standing on one foot with one (or both) eyes closed; etc. What other symptoms are you experiencing: things like cognitive problems, bladder problems, etc? What symptoms do you have that took you down this path in the first place?
What other things were ruled out along the way? Did you undergo blood tests which might have found things like thyroid problems, or diabetes, or other disorders which sometimes cause similar symptoms?
How much confidence do you have in your doctor? It sounds like you like her...have you ever had any reason to doubt her?
Folks get misdiagnosed when there aren't clear definitive positive test results, or test results are "mixed" -- some come back "negative" for MS, some "positive"; or there may be lesions on the MRI, but they're not in places usual for MS; or there are lesions, but a negative spinal tap; or they have other health situations that cloud the diagnosis. Is any of that true for you?
If you're still uncertain, then by all means get a second opinion. Be ready for a new neuro to want you to undergo all those tests again. Sometimes they want to use their own labs and testers, and won't rely on what others have done. Be ready to have to wait awhile -- it's not always easy to get in to a neuro right away. And you might check with your insurance company to see what their policy is, on second opinions. Some will pay for those, others will not, and if the insurance company checks your medical records and decides that a second opinion isn't warranted, they for sure won't pay for it. That doesn't mean you shouldn't proceed to get a second opinion if you're still uncertain -- just that you'll have to pay for it.
You're certainly not crazy to be feeling overwhelmed and uncertain as to how to proceed. And it doesn't help that those around you are telling you different things, too. All you can do is tell them it's YOUR body, YOUR decision, you need some time to think about it, and when you do, you'll tell them what YOU plan to do, next.
And don't hesitate to come back here with questions. Many of us are on the various meds that the doctor is urging you to start, and can help with that decision, too.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....