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Posted 1/26/2007 1:23 AM (GMT -6)
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?
Posted 1/26/2007 6:39 AM (GMT -6)
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?
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.....

Posted 1/26/2007 11:14 AM (GMT -6)
Wow. Thank you for your response. I am so glad I found a place where people have gone through the same things as me. My friends and family mean well, but they just can't understand. All they tell me is not to worry and that they are sorry. I guess that's all they can say, and I don't really know what I expect them to tell me. They care, but they just have no idea the fright that I am feeling. "Don't worry" just isn't cutting it.

I did have the MRI and it did show lesions that my neurologist felt were indicative of MS. I also had blood work to rule out things that can look like MS and she seemed to have checked for everything. I also had the spinal tap, which showed the "bands" (which I am still not sure I understand what those are yet, but I have read that they can be sign of MS) and also an increase in of white blood cells in the spinal fluid (again, which I understand is something they look for in diagnosing MS). I did not, however, have the evoked potentials test. I wondered why she didn't do one for me, and perhaps I should have asked. I assumed, however, she did not feel it was necessary and had enough evidence to go on for a diagnosis. Also, its hard to think clearly and objectively when all this is being thrown at you.

The symptoms that prompted me to seek a neurologist in the first place started about a year ago. I experienced a weeks worth of severe vertigo and went to two family doctors who told me it was probably a virus. A few months later I had some mild facial numbness, which a dentist told me was due to my need for a root canal (which I had, and it didn't help). The latest was on Thanksgiving when the entire left side of my body went completely numb and I lost function of my left hand for about six weeks. That's what finally sent me in to a neurologist ( I did see a family doctor about it first, but he said these things happen and usually just go away. Yeah right). I have function of my hand back and feeling in my body, but the hand is still kinda numb. In the last few weeks the right side of my face is somewhat paralyzed, preventing my eye from closing and making it hard to use my mouth to eat, drink and even smile. I have also lost some hearing in the left ear.

I realize that all my test results are pretty darn suggestive of MS. And all my symptoms are pretty darn suggestive of MS. I have had more than two "attacks" of MS symptoms and they have lasted more than 24 hours and been at least a month apart (again, I read this is a requirement for a diagnosis). My husband seems to think that wanting a second opinion is a way for me trying to find a way out of this. And maybe it is. Maybe I am in denial and I don't realize I am. I don't know. I read so many times that MS is hard to diagnose and can take a long time, but within a month of my first visit with the neurologist I have been diagnosed. That seems fast given everything I have heard and read. And I read about how people are mis-diagnosed all the time.

I guess when I lay it all out like that, it really does look and sound like I have MS. Maybe I was diagnosed more quickly than usual and maybe I should be thankful for that. My neurologist has never given me any reason to doubt her, although I don't really know that much about her history of diagnosing and treating MS. Does that even matter? I don't know. I tend to be and over thinker and I am a little on the anxious side anyway. This is all really throwing me for a loop.
Posted 1/26/2007 12:23 PM (GMT -6)

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 am not a doctor, nor health professional, and don't pretend to be one, here.....

Posted 1/26/2007 1:33 PM (GMT -6)
Friday p.m.
 
Very good afternoon:
 
.....any (good) doctor will respect you wanting a second opinion.
 
Uppitty's advice and questions were right on.  Maybe call your state MS society and ask for a refferal to a MS specialist neuro?
 
It is common knowledge that the sooner you start a drug treatment the better.
 
Are you tired a lot?  How is your vision?  And balance?  Just a few of symptoms that first affected me....
 
Great Luck.  You have great attitude.  John
Posted 1/27/2007 3:59 AM (GMT -6)
Hi there,
 
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
Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron

Posted 1/27/2007 1:04 PM (GMT -6)
Shar, thanks for sharing about your quick diagnosis. I needed to know I wasn't the only one. And thanks to everyone who has responded. You guys have really helped me come to terms with this. Well, I don't know that I have fully come to terms, but I think I was a little in denial those first few days. I feel now, looking at all the information at hand...the test results, my history, my own research and others stories....it's MS. I feel I can proceed forward in confidence that this is indeed what I have.

Thanks everyone!
Posted 1/27/2007 2:43 PM (GMT -6)

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.

 

 

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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