About a year ago I had an MRI bc of a pretty bad headache. Turned out it was toothache related and headache went away. But MRI showed a couple of white spots and my pcp referred me to a neuro. I've seen a couple diff ones now and although I've never had any ms symptoms and subsequent MRIs show no changes, they want me to start on copaxone. I'm really reluctant to start putting this drug into my body bc if an MRI. Maybe I'm in denial, but I also read that some people have ms like lesions, but their ms is never active. I'm only 30 years old. What if I experience no change for another 20 years. Why should I inject these meds into my body now for no reason. Anyone in a similar situation? Did u start DMDs or do nothing? I feel like the dr wants me to take cold meds when I don't actually have a cold!!
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You make complete sense and all of your concerns are valid. It is a personal choice to start this meds whether you have symptoms or not. There have been others in your position, and they decided to be closely monitored with MRI"s only. You are correct, the lesions could be related to many other things. Did any of your neuros check you for any of the MS mimickers?? There are neuros out there who will recommend DMDs just based on an MRI that strongly suggests MS and a positive spinal tap? Did they recommend one in your case??
Originally posted by Confused101 View Post -
There are diagnostic criteria for MS that rely heavily, but not exclusively, on MRI findings. But the current criteria also require evidence of two inflammatory episodes over time. A toothache-related headache doesn't meet the requirement for even one of the episodes. And brain lesions can be caused by conditions other than MS.
As Jenny3838 pointed out, there are several conditions that share some of the same signs and symptoms with MS. You didn't tell us anything about going through the extensive testing required to rule out those other conditions and to confirm a suspicion of MS.
MS isn'tt diagnosed based on MRI findings alone. If you've never had any MS symptoms and there has been no change in your MRI, it doesn't appear as if you meet the criteria for a diagnosis of MS. You don't even meet the criteria for a diagnosis of clinically isolated syndrome (CIS) that might justify starting a DMD. So how your neurologists arrived at a diagnosis of MS and the need for a DMD is a mystery.
If there's no or incomplete evidence that you have MS or CIS (and without a full workup there isn't enough evidence), there's no disease to treat. It's a basic tenet of medicine that you don't treat a disease you don't have. No MS/CIS, no DMD.
On the other hand, if you've had a positive VEP and/or LP, that's a different situation. Additional positive test results do suggest MS. Then the choice is yours whether to start a med that could make you feel worse, with unknown benefit. Everything is a trade-off, and only you know what kinds of trades you're willing to make.
If you're concerned, you could get another opinion from an MS specialist who is independent of the other neuros you saw. Otherwise, without any (other) evidence of MS, it seems reasonable to skip the DMD for now and re-evaluate periodically.Comment
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Redwings is spot on. MS has multiple criteria for diagnosis.
You didn't tell us if you have/have had any MS symptoms, or if you've had bloodwork to rule out other things.
I was diagnosed MS-CIS after optic neuritis incident in addition to brain MRI with lesions and medical history, and bloodwork to rule out other issues.
Doctor would have started me on DMD right away, but I needed more firm diagnosis before I would agree to start treatment.
So, we did cervical and thoracic MRIs and both were negative. Then we did an LP and it came back positive for MS.
I meet with my doctor tomorrow to discuss treatment options. Now that I know I have MS, I want to be proactive about treatment. I don't want to get worse down the road and say "What would have happened if I had started treatment sooner ?" I don't want any regrets.
No one here can diagnose you, but we can advise you. Take redwings advice. Get a second opinion and/or more tests if you need to.
Good luck.Comment
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Thanks for the feedback. Glad to see that there are others who see my point. I did have blood work done to rule out lupus,etc., all came back negative except that i am vit D deficient, but I think a lot of people are. I did ask for a spinal tap, but my neuro said it wouldn't help in making a decision bc it can come back negative even if I have ms. My MRI results all indicate an 'underlying demyelinating disease of the central nervous system', but have otherwise been listed as 'inconclusive'. The MRI shows a few little white spots on brain and one tiny spot on spine. But couldn't that be something else? I've never had any symptoms. Although about 6 years ago, my right hand (wrist and fingers) would go numb for about 10 seconds and then it would be fine. My pcp said it was a pinched nerve. It lasted a couple weeks and went away. I thought that ms related numbness lasted longer, not numb for 10 seconds a couple times a day, but the neuro said this was probably my first ms attack. I just don't see how. Your opinions are appreciated. I'm trying to schedule an appt with another neuro, but the copaxone nurse is coming to my house nxt tuesday.Comment
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You have every right to a second opinion, and the right to make your own medication choices.
Early treatment can make a big difference on progression, but I am not hearing that you are convinced about your diagnosis.
I think your request for a spinal tap was reasonable too.
While it is true a small percentage of MSers may have a negative result, it is the test that confirmed my diagnosis.
This is alot to take in......((((hugs to you))))))Comment
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That's one of the worst cases of circular thinking I've heard come out of a medical professional. They're really saying that it doesn't matter if the LP is positive or negative because they've already made a diagnosis in the absence of the other diagnostic criteria. And they might be correct, but diagnostic criteria exist for a reason.Originally posted by Confused101 View Post
Yes, the LP might be negative. But you'll never know if you don't even do the test! It might be irrelevant to your neuros, but it's important you YOU because you need to at least make an attempt at meeting the diagnostic criteria to help YOU make a decision about treatment. It's far from a frivolous request. You're entitled to know.Comment
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I had a similar diagnosis based on a tremor that led to MRI, countless blood tests, negative LP and eventually Copaxone. My dr suggested that the benefits of starting early are good and the side effects are low.
So for the last 9 months I've been giving myself daily shots on a best guess. I met with my first neuro again this week and she agreed with the diagnosis of the second neuro (summer neuro vs rest-of-year neuro) which really bummed me out. I'm still holding out hope. I'm going for an MRI in a couple weeks to see if my white spotted brain has changed in the past year.
The only side effects I get are injection show pain and sometimes bruises. Your confusion is warranted and I'm sure everyone here empathizes with you.
GL, e in new yorkComment
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I scheduled an appoitment with another neuro for a second opinion, so I called the copaxone nurse to see if we should reschedule our training appointment...since I don't want to take the real shot until I talk to this other neuro and get a spinal tap, etc. I'm a little taken back by what the nurse said. She said let's keep the appointment and I'll train you without giving you the real shot, because I'm sure the other neuro will concur with the diagnosis. I'm really baffled as to why, knowing absolutely nothing about my condition, she would say that the other neuro will concur with my diagnosis??? I got really irritated and told her that I've never had any symptoms, not even enough to be considered for CIS, or any other tests by the MRI that's showed no changes, etc. I just don't get how/why they make their assumptions. Very frustrating!!Comment
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Hi elephant911, sorry to hear that you are in a similar situation. Were there a lot of scars/lesions on your MRI? If the LP was negative, I'm wondering what helped convince you to take the meds? I think my MRI showed 4 small lesions in different spots on the brain and one on the spine. I did finally find some criteria on what size they should be, so when I go back for a second opinion next week, I am going to ask the neuro if mine are that size, bigger or smaller. I guess I just need the dr to convince me that I have MS. I'm not saying the other neuro was wrong, just that she didn't succeed at explaining it well enough that I would could come to terms with needing the meds. I don't think I can commit to them unless I know that I will be better off on them, then without them.Originally posted by elephant911 View PostComment
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Although I am a big fan of starting a dmd early I think you are asking some valid questions that deserve more answers. I would definitely see a MS specialist for a more definitive diagosis.
There are people like you who are fortunate enough to be diagnosed early by MRI when looking for other things who have started a DMD without a true MS flare. Imvho lesions on MRI is not a normal finding for someone your age so I would not stop trying to figure out what has happened.
If it makes you feel any better my physician said even if it turned out that I didn't have MS, yeah right snort, the Copaxone wouldn't hurt me in the meantime. Good luck.He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
AnonymousComment
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Radiologically isolated syndrome (RIS) came up under another thread. Here's a link to the video/transcript of a "debate" between neurologists about whether RIS is MS and whether it should be treated:
http://www.medscape.com/viewarticle/720673Comment
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Wow that's really frustrating. When my neuro said it might be MS they did a bunch of tests to confirm it--spinal tap, VEP, some nerve conduction studies, another where my brain activity was measured, and one where I listened to a bunch of beeps (SSEP?). I don't remember the names of them all anymore. I was lucky in that the doc I was referred to treats many MS patients.
Most physicians I think would also want to be sure of the diagnosis, especially since your symptoms seem to be relatively mild and explainable by other causes (possibly), and DMD is generally a lifetime commitment. Personally I would insist on more testing. Ask your doctor to review your MRI films with you as well (if they haven't done so already), since I think there's certain patterns of where the lesions commonly occur in MS (note--I'm not 100% sure on this). Ask your doctor why they think its MS other than the MRI, such as if they noticed any abnormal reflexes. And really they should be willing to do a spinal tap, since this can (often) confirm the diagnosis and rule out other things.
Good luck!Comment
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My first neuro said that I had more spots than she was comfortable with for someone my age. My dx came last year from a highly regarded MS specialist in New York based on symptoms and MRI. Coming back to the first neuro last week was pretty disappointing when she agreed with the specialist. Part of me was really hoping the dx was wrong. MRIs later this month.Originally posted by Confused101 View Post
From the copaxone website: "COPAXONE® effectively reduces relapses by 29% in people with RRMS." I thought it was higher than that....
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