Friday, April 10, 2009 heatheliz asks

Q: doctor "95% sure" of ms diagnosis. starting copaxone. need support.

I appreciate anyone reading this and offering their insight.

I am a 39 year old woman who has recently been diagnosed with ms, or at least the doctor says he's 95% sure. I will begin by giving my history and ask my questions at the end.

When I was pregnant with my second child, my arms started falling asleep at night (about 21 months ago). During both pregnancies I always wondered if I had a blood clot in my leg because I would have lots of achy pain, which I'm sure many people who are pregnant can feel. Since the last pregnancy my arms have continued to fall asleep at night, often, and I have had many episodes of numbness and tingling in my arms and hands and achy leg pain from time to time. Most of the time the symptom would be there one day and gone the next. Then I started with this "foggy" feeling in the afternoon, lots of fatigue (I have two small children, so I always just thought "I'm a tired mom") feeling "scatter-brained" and forgetful, feeling "hot" often. Then had an episode of eye pain, no vision loss, that was diagnosed at probable optic neuritis, due to abnormal pupil response. Since then when looking in the mirror I notice my pupils seem to be fluctuating, like they are having a hard time deciding whether to dilate or constrict. I have always had pupils of irregular size, one smaller than the other. All of this led me to internal med. dr. and then to neurologist. Here is what they found. Brain lesions in white matter, 8 of them. No lesions in spinal cord, or at least cervical region. Evoked potentials testing showed clear delay for visual. At first with MRI and symptom evidence only neurologist said 80% sure of ms, then after evoked potentials jumped to 95% sure. Said I could do spinal tap, but not always clear indicator, could have a false negative. Started Copaxone two days ago.

Here are my questions:

-what is up with the 95% diagnosis? I am having a hard time with this because I tend to be a very "black or white" type person. the dr. said even with a positive spinal tap that it would probably still only be 99% certain dx. Is this commom for dr.'s to not be able to say it's ms w/100% certainty? the dr. says he has ruled out the other things it could be through blood testing and MRIs of vascular system.

-I'm sure I'm more aware of subtle symptoms since my dx, but it seems that I feel something almost daily, none of it debilitating at all, but an abnormal numbness/tingling, twitch or spasm, or achy pain. Is this possible? that I could feel things daily...these symptoms wouldn't be classified as exacerbations, would they? any exacerbations I have had have felt mild, lasting a day at the most. but more of just a constant coming and going of subtle symptoms...is this characteristic of ms?

-The dr. said my lesions were not "active", so why am I still feeling symtoms?

-I have only taken two shots of Copaxone, one in each thigh, and my legs are feeling particularly weak, achy and numb, could this just be another ms symptom or possible negative effect of the copaxone? actually I'm feeling some arm tingling/numbness too.

I think that's it for now (as if that's not a long enough message!). I'm sure I'll have more soon. Please let me know what you think of all of this. I really appreciate your time!

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Answers (3)

Lisa Emrich, Health Guide

4/10/09 7:47pm

Hi Heatheliz,

Welcome to HealthCentral. I'm sure that you have many questions right now and are feeling a bit in shock with the diagnosis. Completely normal. Fortunately, there are answers to your questions. Let me try to explain. (btw, my pupils do not agree on size either due to past optic neuritis.)

For a diagnosis of definite MS, there must be: Evidence of damage in at least two separate areas of the central nervous system (dissemination in space), AND, Evidence that the damage occurred at least one month apart (dissemination in time), AND, Elimination of all other possible diagnoses.

From what you've described, there is evidence of 'dissemination in space' due to lesions in the brain AND result of Visual Evoked Potentials showing damage. But there is not evidence of 'dissemination in time' because you 1) do not have obvious active and non-active lesions, and/or 2) have not had a second clinical attack.

Some neurologists might diagnose this as Clinically Isolated Syndrome (CIS) with high risk of developing clinically definite MS with a second attack. The good news is that Copaxone was just recently approved by the FDA for use in CIS (or highly probable MS). Excellent news that your neurologist has a proactive approach to getting you started on treatment.

Here's further information:

* Beginner's Guide to MS: Do I Have MS? What Does It Take To Get Diagnosed with MS?

* Beginner's Guide to MS: What Is a Lesion?

* Beginner's Guide to MS: Multiple Sclerosis Diagnostic Criteria, The History

With MS, symptoms can come and go without being part of a full-on exacerbation. Each day my symptoms fluctuate slightly. The official definition of a relapse includes new and/or increased symptoms which last for more than 24 continuous hours and are separated from a previous relapse by at least 30 days.

One of my entertaining symptoms is a little buzz which comes and goes in a few specific spots on my leg, shoulder, and hip. Just a little 'bzzzzzzzz' that is controlled with the nerve pain medication, neurontin.

If a lesion is active, that means there is currently active inflammation present at the site of the lesion resulting in a breach in the blood-brain-barrier. Where there is a lesion, there is damage to the myelin and possible interference with the nerve transmission. But number and location of lesions does not translate directly into symptoms.

If/when the numbness in your arms or legs spreads to a larger area and lasts longer than 24 hours, then definitely call your neurologist because this 'could' indicate a relapse. Also, since you are on Copaxone, you can always call Shared Solutions with any questions you have about side-effects. The nurses are always willing to offer help.

For some injection tips:

* Beginner's Guide to MS: Subcutaneous Injections, 7 Tips for Reduced Pain and Skin Irritation

I think that I've addressed each of your questions. Please ask as many questions as you wish, that's why we are here.

Paul

4/10/09 5:30pm

Until the cavalry comes in the form of those who know much more than me, a writer here, Merely Me, interviewed a neurologist who goes through some of the steps toward diagnosis and it may make interesting reading to you.

You can find that here.

Since then, he has answered a number of questions from members here. They are found here and here.

He also answers her questions about the decision to take disease modifying drugs, the pros and cons, here. The comments on all of these articles are very good too.

I know you will get more, much better information when others come online. I just think he explains how he makes a diagnosis very clearly.

chipmunk1463

10/27/09 8:45pm

My God, you are living what I am living, except I had the negative spinal tap, and the neurologist believes I have had some new lesion activity since the first MRI. I have had vision loss, but the neuro-ophthamologist says it is not caused by optic neuritis. I received my diagnosis this year, took Avonex for 9 weeks with nasty and persistent side effects, and then switched to Copaxone 2 months ago. I also have RA (2000) and had to stop injecting Enbrel with the onset of the "MS." I do not believe I have MS. While I have the annoying, small-scale symptoms associated with MS, I have not had definite attacks that send you to the doctor. The eye problem could be caused by the RA. Maybe my decrease in mental clarity could be caused by depression that is caused by having health issues. I think I am going for a second opinion. Maybe I am waiting for a sign. I just do not want to start this whole mess over again.

Q: doctor "95% sure" of ms diagnosis. starting copaxone. need support.

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