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Just diagnosed - Should I get a second opinion?
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Just diagnosed - Should I get a second opinion?

Let me start by saying, *I* don't feel the need to get a second opinion, nor does my husband, who has been at all the appointments with me. You all will probably say "there's your answer" .. but I am curious what others have done.

I had another thread --- I posted all of my results, but the bottom line is, my doc is an MS-Neuro at the Yale Center for Multiple Sclerosis and Immunology. I went there after a single episode of Optic Neuritis, and  a brain MRI which showed a couple non-specific bright spots.

Upon meeting me, she said my MRI was "unremarkable" but she was going to repeat the MRI with her own machine, and also do a Thoracic and Cervical Spine MRI. She also ordered a slew of bloodwork to rule out "MS Mimickers" and a lumbar puncture.

Today's appointment was to go over the results. She started by saying there were no O Bands in my spinal fluid. (inside, I thought that meant all-clear) Then she said that the lesions in my T-Spine are MS-related .. so combined with the Optic Neuritis, numbness I've had in my arm (I always assumed it was from typing and ignored it) .. and the bright spots on the brain .. I have a diagnosis.

The plan is to "digest" for a week, then go back next week and discuss medications. She keeps saying that medicine is so much further today than it was even 5 years ago - she said with medicine, she anticipates minimal life interruption, and if I do get attacks/relapses, we will address them but she changes medication after 2 relapses and tries something else. She said people who have been diagnosed 10 years ago are in a much different boat than I am, and therefore not to assume I will be in a walker from this disease.

1st thing: the few people I've talked to today in my life have all asked, "are you getting a second opinion?" .. which makes me question if we should ..

2nd thing: it all sounds too easy. Multiple Sclerosis has such a STIGMA attached to it. The logical part of me GETS what she is saying about medicine, remission, etc .. it seems easy to have MS. She compared it to diabetes, you have it for life, but manage it and you will be fine.............. The emotional part of me is dealing with the Stigma of MS.

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1831849_tn?1383231992
Hi Deludel - Welcome to the group :-)

Everyone of us with MS is different, both in the way our disease presents and how we deal with it emotionally. It would be hard not to have some emotional reaction to learning that yo have an incurable, degenerative disease of your central nervous system :-) You will find your own path through your new maze.

As to second opinions, you'll hear from both pros and cons here. From how you describe your MS neuro I would not bother looking elsewhere. Your MRI's are your MRI's they wont change when view by another doc.

She brought you in, sat down with you, gave you her DX and presented the reasons for it. She presented you with med choices and is giving you a week to think about it. Then she's bringing you back in to discuss. She is affiliated with a the MS clinic at a large, respected teaching hospital. In my opinion, it doesn't get better than this :-)

As far as the "stigma" goes, again you will find your own way to deal with it. "It" is the reaction you are expecting from others. In my opinion that reaction will be based on how you present yourself. Like you, I don't look like there is anything wrong with me. I don't limp, I don't stammer, I get up every day and go to work. I also chose to tell everyone who would listen that I have MS. I wanted to disarm the world. I told family, friends and my job. I told them all while I was standing on my own two feet :-) In my mind I took away all the possibilities for whispers. "Here I am. I have MS. Next..."

Like I said you'll find you're own path. But know that you are in good company here :-)

Kyle
21 Comments Post a Comment
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1831849_tn?1383231992
Hi Deludel - Welcome to the group :-)

Everyone of us with MS is different, both in the way our disease presents and how we deal with it emotionally. It would be hard not to have some emotional reaction to learning that yo have an incurable, degenerative disease of your central nervous system :-) You will find your own path through your new maze.

As to second opinions, you'll hear from both pros and cons here. From how you describe your MS neuro I would not bother looking elsewhere. Your MRI's are your MRI's they wont change when view by another doc.

She brought you in, sat down with you, gave you her DX and presented the reasons for it. She presented you with med choices and is giving you a week to think about it. Then she's bringing you back in to discuss. She is affiliated with a the MS clinic at a large, respected teaching hospital. In my opinion, it doesn't get better than this :-)

As far as the "stigma" goes, again you will find your own way to deal with it. "It" is the reaction you are expecting from others. In my opinion that reaction will be based on how you present yourself. Like you, I don't look like there is anything wrong with me. I don't limp, I don't stammer, I get up every day and go to work. I also chose to tell everyone who would listen that I have MS. I wanted to disarm the world. I told family, friends and my job. I told them all while I was standing on my own two feet :-) In my mind I took away all the possibilities for whispers. "Here I am. I have MS. Next..."

Like I said you'll find you're own path. But know that you are in good company here :-)

Kyle
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751951_tn?1406636463
I am still undiagnosed, but I will say that I agree with Kyle's perspectives (at least, as expressed above! ;-D) entirely.
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Kyle did a wonderful job of describing our "quagmire" of dealing with MS.  Everyone deals with it differently.  Learn all you can about it and we are always here............
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Avatar_f_tn
Me too--agree with Kyle, that is.

You can always get another opinion, and should do so if it makes you more comfortable. But I think your doctor nailed it.

Don't get what you mean by stigma. It's not as if we need to go around with a bell, shouting 'Unclean.' No disease is fun, but lots are worse.

ess
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Hi there, a lot of people told me I should get a second opinion but I was confident my neuro had ruled everything out, I had enough lesions, enough attacks and a highly inflamed CSF result. The fact that when he saw my MRI and did not think I had MS originally clinched it for me.

I asked my neuro if he had any hesitation about my dx and he said he had none.

Like Kyle, I am telling everyone who will listen and since my MS is mostly invisible there has not been an issue with stigma at this point.

You will find your own path on this journey as we all have. Once you decide on how you handle the dx your journey will start.

I am sorry for your dx but glad you have answers and a neuro who will listen and talk to you.

Corrie
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5887915_tn?1383382380
I was dx'd just over 3 weeks ago. I did not expect to be dx'd on the follow up visit & had gone on my own to the appt. So when my Neuro told me I had MS I was a little shocked & immediately jumped in saying are you totally sure. My Neuro was sure apparently from the first MRI & my Neuro exam to a great extent. He is very confident with the dx but "I" wasn't.

I think that you have met the Mc Donald criteria for DIS & DIT now you have the spinal lesion. The CSF O bands is not found in everyone. I would give yourself some time to deal with this. I am now sort of over what other people might think & am no longer questioning my dx.
I already have had RA the majority of my life so I already have poor walking that makes me look different anyway. I am no different to what I was before I was dx'd but I am more equipped to manage symptoms & daily living. I was already on treatment which is already used for the RA.

I would speak to your local MS society/chapter if you want to. The MS Society have been very helpful to me & they reassured me that my Neuro is very much respected in the community.

Give yourself some time to take all of this in. It's a journey & you will feel different emotions throughout it. I don't think you should worry about what others think. I have tried to just tell people near & dear as it comes up but you do what "you" feel comfortable with.

If you feel you want a 2nd opinion then you must do that but I listen to what you have said & I feel you need to give yourself time first. MS can be dx very easily in some people. I hope this helps a little.

Take care of yourself.

Karry.
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Avatar_m_tn
I just thought I would pop in here about the o-bands, I am one of those with a MS DX and no o-bands. So it does happen. I think I read somewhere about 20-25% of those with MS don't have o-bands. Which is why the LP is not used to rule out MS. It can only be used to confirm a DX when the o-bands are present.

Dennis
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5887915_tn?1383382380
Sorry I forgot to add. I was so unsure of my dx that I immediately felt I should get a second opinion. I also had family saying are you sure you have MS which got me in even more of a state. I think you will have people making odd comments due to their lack of knowledge of MS. I believe it's up to you to set them straight (if they will listen) & try not to listen too much to what other people say.

I'm sorry you for your dx. but I guess it's better to know than not.

Take Care

Karry.
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572651_tn?1333939396
Hi, Deludel.  I'm sorry I am just getting around to welcoming you to the club here.  Sorry you have MS but I have to agree with what has already been said.

Your neuro sounds beyond competent.  MS is not a dx that is given lightly and she wouldn't say it was MS unless she was almost 100%  certain.  If the second opinion is necessary to make everyone else feel better, I'm pretty sure I wouldn't do it.  If I had doubts, which it sounds like you don't, then I would consider it.


As for the second part of your question - thinking out loud , what you are saying is huge and I tend to agree with your doc.  I often tell people if you are going to have MS, this is the time- There are so many treatments that weren't around 20 years ago, or even ten.  The image of someone in a wheelchair is no longer the whole truth about MS.  Yes, there are those cases that progress and create the mobility problems, but most everyone now, if they get on treatment and stay on treatment, will continue to be ambulatory for their entire life.  Our life span will be equal to everyone else our age.

Once you figure out the MS stigma in your own brain, then you can move on and try to educate others about MS. It's a tough sell, but you can do it - they will figure it out as they see you remain constant in your health.

Welcome, again.  I hope we see you around and sharing your story and questions.  ~Laura
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Sorry for your dx. I've been following your developing story with interest. I agree your neuro sounds very competent. As for what others think, it's not going to matter. You are important, do what you need. Take care.
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987762_tn?1331031553
I wish I could say that I'm totally surprised by your dx but i'm still sorry you've joined the club no one chooses! HUGS!

I want to point out that you should be very proud of your self, for questioning and not simply accepting the first opinion of  "There were nonspecific benign findings, and no findings of MS", they got it so very wrong but you took charge  and found the correct answer, and from someone who would actually know more about MS than the average neurologist.

From my way of thinking, you've already had a second opinion, the first opinion (although questionable) got it wrong and a lot of people would of stopped right there..........until their next relapse, or their next.

IF 'you' trust your neurologist, IF 'you' are comfortable with him, IF 'you' feel he can help treat your MS, then there isn't any benefit to you, in getting another neurologist to confirm your dx but if you have doubts and need it confirmed, then do what feels right to you, because so far your doing a great job being your own advocate!

Hugs............JJ

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5112396_tn?1378021583
I think you'll find this first year after diagnosis will still involve a little bit of denial, regardless of how many opinions you get (and like the others, I think you got a very competent diagnosis ultimately). I think it's part of the process.

I spent the first few months in a haze of internet research, learning to self-inject like a pro, and learning how not to freak out at every fallen asleep limp, pre-coffee less-than-crisp vision, fumbled word.

By a year in, I knew the sky wasn't falling and I was slowly gaining faith in my ability to properly and appropriately read my body. It's a heck of a shock, of course, but the dust will settle and life will go on, just with a couple of adjustments.

I hope you find this forum as useful to you at this stage in your journey as I did (and still do).
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5112396_tn?1378021583
er.. limb, not limp!
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5538989_tn?1404579415
I agree with everyone else. Your Neuro sounds thorough. I was an easy Dx; however, I was still stunned with the news and began questioning him if he was sure it wasn't mimics, etc. He then told me the news I needed to hear: "You can 2nd guess your diagnosis but all you are doing is delaying therapy. You can choose to deny your diagnosis or you can tackle it head on".

I did obtain a 2nd opinion as a form of finding an alternate provider. If you are comfortable with your Neuro, then by all means, research a DMD and begin treatment soon.

I am sorry you are hear but welcome! People here are warm and knowledgeable. I wish you the best of luck!

Warm Regards,
Lizzie
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I am 51 yr old female and for about four weeks have experienced numbness and tingling in my feet, hands, and lower part of legs.  The vision in my left eye has become cloudy.  I feel so awkard at everything I attempt to do and my thinking process is slowed.  Went to a neurologist who did a physical exam.  He then brought me back in for an EMG and followed with a Visual Evoked Test and MRI of Brain and Spine.  Neorologist will not tell me any results until next Tuesday.  Of course I am reading a lot into this and wondering if I am too old to be diagnosed with MS. I also think doctor must have seen something upon my physical exam to order so many tests.  Am I right? I am hypothyroid and have been on Synthroid for avoer 15 years.
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667078_tn?1316004535
I got a second opinion because I was not down in my gut convinced I had MS. All the evidence was strong for MS but I could not accept it. The second opinion sealed it for me.

It is really important to get on a Disease Modifying Medication and manage this disease. Damage in MS happens with or without symptoms. You could be going along with little or no symptoms and the MS is damaging your CNS. Getting on a drug early on in the process is important.

MS is a chronic illness. There are so many more options since I was diagnosed in 2009. I live a happy life with MS. I train dogs, hike, camp, ride horses, and do yoga.

I can't walk as fast as I used to but I can walk. I have permanent double vision but I still navigate the world. I look at it all as a challenge.

It is not easy. It takes help. I got counseling. My husband and I have to work hard at communicating.

Life with MS is dealing with change. Accepting that things may cahnge and I have little control of that makes it easier.

Alex
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1831849_tn?1383231992
Hi Lisa - No, 51 is not to old to be diagnosed. That's how old I was when I was diagnosed 2 years ago. There can be a big difference between when you are diagnosed and how long you have, or may have had, MS. In my case it was nearly 20 years.

As to the tests, try not to read too much into it. He us being very thorough. This is a good thing :-)

Kyle
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5987839_tn?1381926102
This thread, and your responses, mean so much to me. Thank you to ALL, you ALL have given me valuable messages to absorb.

Some things that stood out to me in this moment:

- Everyone of us with MS is different, both in the way our disease presents and how we deal with it emotionally. It would be hard not to have some emotional reaction to learning that you have an incurable, degenerative disease of your central nervous system :-) You will find your own path through your new maze.
................................. This is a perfect "Welcome" message. Perfect.

I want to point out that you should be very proud of yourself, for questioning and not simply accepting the first opinion of  "There were nonspecific benign findings, and no findings of MS", they got it so very wrong but you took charge  and found the correct answer, and from someone who would actually know more about MS than the average neurologist.
From my way of thinking, you've already had a second opinion, the first opinion (although questionable) got it wrong and a lot of people would of stopped right there..........until their next relapse, or their next.
............................Boy, did I need to hear this. Really. Those closest to me (my husband and BFF) thought I was manically Googling things when I got Optic Neuritis. And I was. Manic is an appropriate word. However --- I consider myself intelligent and I ignored a LOT of readings, knowing they were inflated or rare stories, and looked for the common denominators. One was:  a Primary is not qualified to rule MS in or out. Period. When I called the MS Center at Yale, a few people thought I was really reaching. 'Trust your gut' has done me right in a LOT of areas in my life, and this was one of them.

- By a year in, I knew the sky wasn't falling and I was slowly gaining faith in my ability to properly and appropriately read my body. It's a heck of a shock, of course, but the dust will settle and life will go on, just with a couple of adjustments.
............................. Great perspective. I am 48 hours into a lifetime diagnosis.

- It is really important to get on a Disease Modifying Medication and manage this disease. Damage in MS happens with or without symptoms. You could be going along with little or no symptoms and the MS is damaging your CNS. Getting on a drug early on in the process is important.
...................... I had already known that about the drugs, and at this point I am worried about side effects (we pick a drug next week w/ the doc) .. so reading this just validates the importance of getting started, and getting it right. Having a "silent" disease is weird, I'm not used to taking meds unless I feel something that NEEDs a med. I do take anti-depressants every day, and they work wonderfully. If I forget a dose or miss a few because I was lazy about refills, I definitely notice my mood change ... so at least I am already in habit of taking something even though day-to-day, I don't FEEL the problem (BECAUSE I'M ON THE MED! (duh) )
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667078_tn?1316004535
I have MS and Cancer and have to take chemotherapy all they time. I was so scared of the side effects. My first kind of chemo was bad. This new one has awful side effects like your skin peeling off and the only side effect I have had was fatigue and I am on my third round. Not everyone gets every side effect. It is simpler with stage 4 Cancer you do the chemo or the Cancer takes over.

If you saw me today you would not know I have had PMMS since I was 2 years old and I have stage 4 Cancer. I walk and talk normally. I look great my PCP is amazed. I have my hair. I have a service dog and a lady last week asked me why. I said I have double vision and run into things. She said "You don't look like you have double vision."

Whatever you deal with in life you take it one step at a time. The fear comes from the unknown. Before starting a new chemo I am a wreck. Same with Copaxone. That first shot was scary because it made the disease real. After I start a drug I know what I am dealing with and it is doable. Even my worst chemo was doable, it was not fun but it was doable. MS drugs are easier than chemo.

Black humor helps me a lot.

Alex
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987762_tn?1331031553
ROFL "manically googling" is a sign of the times, my son was born manically googling lol the Internet taught him quantum physics when other kids were googling Spongebob Squarepants. The key is understanding when googling is your friend or foe, when its a useful teaching tool or creating your nightmares!

I really don't think its all that unusual these days, for people to google their dx condition, no matter what it is, sx's are more of a problem when googling because it can feed fears, if people assume too much or leap to conclusions etc. The Internet is a very good, value added teaching tool, if you remember to absorb the information with a dash of common sense :o)

So have your googled the DMD's yet?

cheers.........JJ


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198419_tn?1360245956
Deludel,

Adding on a welcome to you. Your attitude is perfect :) So glad to see it. I typically recommend 2nd opinions only because of the complexity of the disease and the quantity of mimics.

While you very much describe a super thorough neuro (congrats on that btw!), my opinion on 2nd opinions comes from treatment options. All mimics have vastly different treatment options than MS. And, because there is not that "one" test that indicates MS (it's the whole puzzle that tells the tale), it's my opinion folks should have a 2nd opinion. Just to be certain. But, then again that is me. I certainly by no means think it's a must, just a consideration from one MSer to another.

Glad you found us here - and I'd like to say welcome to you as well, albeit belated :)
-shell
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