New here and need to hear your experience

littlechina said...
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?

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.

Again, I'm so sorry that you even have to be here...but I'm glad you found some support.

Please be careful about what you read, particularly what you read on the internet....even here.  There is a lot of false information "out there", and a lot of folks who have their own agenda -- and will try to convince you that you have all sorts of things other than MS.

But -- as you've noted --it does sound like you have MS.  MS really isn't all that difficult to diagnose if -- as in your case -- there are plenty of signs pointing at it: The o-bands, protein bands that show up in your spinal fluid **if you have a demylinating disease**, and MS is a demylinating disease, and the most common of those; And you have lesions indicative of MS; And several different episodes, separated by time and symptom, that all point to MS.  I actually was told I had MS by my ob-gyn, who sent me off to a neuro to confirm it (he based it on his observation of what I've come to learn are "clinical signs"; the neuro went on to do the spinal tap. I was diagnosed with MS long before there were MRI's...) So I'd suggest that, no, it's not all that important to know whether your neuro has had a long history of diagnosing and treating MS. I suspect she does -- again, MS is one of the more common neurological disorders, and most neuros have indeed treated patients with it.  As you noted, she likely did not subject you to the evoked potentials because all the other test results were pointing to MS.

You have every right to be anxious.  And if you're still not fully convinced, it wouldn't hurt to call the neuro and either talk with her on the phone, or go back in with your husband, and ask her to go over it again: what were the results that pointed to MS; is she convinced it's MS, and why; and maybe hearing it a second time, with your husband hearing it too, will ease some of your doubts.

Some things you might want to ask her: does she have a preference as to which of the meds she'd like you to be on; when should you call her (with every new symptom? with symptoms that are particularly troublesome? ) Should you talk to her or does she have a nurse or nurse-practioner who can be helpful? Does she want follow-up visits -- or is she one of those neuros (like mine) who would be fine with you seeing your regular family physician, who can consult with her if there are questions? Is your family physician willing to be your PRIMARY doctor?

And then come back here if you have more questions, or just want to vent.  We'll try to be helpful.

I'm sorry to hear about your diagnosis.  I thought I'd share my experience....  I had one bout of left sided numbness, then an MRI a few weeks later, and then a diagnosis that day.  No LP, no evoked potentials, just the clinical exam,  MRI, and a family history. 

So while some people can take years to get a diagnosis, some are diagnosed very quickly, like you and me. I was diagnosed at the hospital.. when i went to the MS clinic the neuro looked at my info and confirmed the diagnosis, but I honestly didn't have a doubt.  I started treatment about a month later and am very glad I did... I had many many flares those first few months and they seem to have finally levelled off, I believe it was the injections.

Best to you,

Shar

Hey, a little denial is a good thing.  It gives us time to process and sort through otherwise overwhelming information, and make sense of it in the end.  You're doing fine.  I meant to say in an earlier post, that I was diagnosed relatively quickly too -- about 3 months from the time I went in to the doctor to diagnosis (this was before MRI's..)  The doctor told me later that he was pretty sure I had MS from the moment I walked into his office -- he saw me walking in and noted my awkward gait -- but of course had to confirm it through testing.  So lots of folks are diagnosed pretty quickly.

The internet is a wonderful thing - -we can learn all sorts of things through surfing the net.  But it's dangerous, too, as there is a lot of misinformation out there. And folks who are searching frantically for information because their situations are complex, and they've not gotten a diagnosis of something just yet.  Those who get answers quickly and early aren't usually as vocal or noticeable..

Anyway...glad to see you're dealing ok with this.  Don't hesitate to come back with questions or concerns, or just to share.