Just so confused

[Joysmom]

Neuro has said my symptoms (peripheral vision loss, brain lesions, bladder incontinence, abnormal evoked potentials) mean "clinically probable MS" as I meet 2/3 of the McDonald criteria. However, normal spinal tap and no active demyelination spots mean no definite diagnosis. (I think...neuro hasn't actually taken the time to explain everything to me.)

I have to admit, the whishy-washiness of the diagnostic criteria is hard for me. I feel as if I'd be much more at ease knowing one way or the other whether I have MS or not.

Regardless, I'm starting IV Steroids next week, but I'm worried we may just be settling on MS. Is that a valid concern?

It's also hard for me to not know what to expect next, which from my reading seems like something I'm just going to have to get over.

[KoKo]

Neuro has said my symptoms (peripheral vision loss, brain lesions, bladder incontinence, abnormal evoked potentials) mean "clinically probable MS" as I meet 2/3 of the McDonald criteria. However, normal spinal tap and no active demyelination spots mean no definite diagnosis. (I think...neuro hasn't actually taken the time to explain everything to me.)

I have to admit, the whishy-washiness of the diagnostic criteria is hard for me. I feel as if I'd be much more at ease knowing one way or the other whether I have MS or not.

Regardless, I'm starting IV Steroids next week, but I'm worried we may just be settling on MS. Is that a valid concern?

It's also hard for me to not know what to expect next, which from my reading seems like something I'm just going to have to get over.

Hi Joysmom

Welcome to MS World.

I have to admit, the whishy-washiness of the diagnostic criteria is hard for me. I feel as if I'd be much more at ease knowing one way or the other whether I have MS or not.

Waiting for a definite diagnosis can be very frustrating! But the neuro has to feel confident that it is MS by using the McDonald Criteria, so that he does not run the risk of misdiagnosing.

Regardless, I'm starting IV Steroids next week, but I'm worried we may just be settling on MS. Is that a valid concern?

It would only be a concern if your neuro has not ruled out all other possible conditions.

It's also hard for me to not know what to expect next, which from my reading seems like something I'm just going to have to get over.

The unpredictability of MS can be anxiety provoking. We learn to live with that, but it's definitely not always easy.

Take good care of yourself. Learn all you can about MS. Feel free to ask questions, and we'll be glad to help, if we can.

Wishing you the best.

Take Care

[Joysmom]

Thanks, KoKo.

I think I'm just worried about settling on a diagnosis because my symptoms seem to be so borderline.

For example:

1. My peripheral vision loss is only on one side of each eye. And it's not always gone. It comes and goes, although more recently it's mostly gone. (It started 3 years ago, and was initially diagnosed as ocular migraines after a clean MRI.) Also in my right eye, I seem to be able to see my blind spot, which is incredibly annoying. It addition to both of those symptoms, I have a lot of shadows and flashes of light in both eyes--both when open and closed. What I DON'T have is any eye pain, and my eye dr. says my optic nerve looks healthy.

2. Although there are lesions in my brain, the radiologist report was willing to attribute them to migraines, and there is no evidence of demyelination in the spine or optic nerve. Evoked potentials were abnormal but spinal tap was normal.

The neuro was willing to go with "probable MS" before the spinal tap and I guess I just thought that test would rule it in or out, but it sounds like I'm just stuck in limbo until more symptoms appear. Is that how it works?

If so, how do you recognize a "flare"? What am I actually looking for or waiting to have happen?

I believe the IV infusion I'm starting is Solumedrol. Has anyone had success with alleviating vision loss with that?

[KoKo]

Thanks, KoKo.

I think I'm just worried about settling on a diagnosis because my symptoms seem to be so borderline.

For example:

1. My peripheral vision loss is only on one side of each eye. And it's not always gone. It comes and goes, although more recently it's mostly gone. (It started 3 years ago, and was initially diagnosed as ocular migraines after a clean MRI.) Also in my right eye, I seem to be able to see my blind spot, which is incredibly annoying. It addition to both of those symptoms, I have a lot of shadows and flashes of light in both eyes--both when open and closed. What I DON'T have is any eye pain, and my eye dr. says my optic nerve looks healthy.

2. Although there are lesions in my brain, the radiologist report was willing to attribute them to migraines, and there is no evidence of demyelination in the spine or optic nerve. Evoked potentials were abnormal but spinal tap was normal.

The neuro was willing to go with "probable MS" before the spinal tap and I guess I just thought that test would rule it in or out, but it sounds like I'm just stuck in limbo until more symptoms appear. Is that how it works?

If so, how do you recognize a "flare"? What am I actually looking for or waiting to have happen?

I believe the IV infusion I'm starting is Solumedrol. Has anyone had success with alleviating vision loss with that?

Joysmom

Ok, now I understand better. Thanks for elaborating.

You aren't diagnosed with definite MS at this time.

Sounds like your neuro considers MS a possibility, and wrote "probable ms" on your order for the spinal tap because they do have to indicate a reason for having the test. To complicate things for you is the fact that 5-10 percent of persons with MS never do show abnormalities in the spinal fluid.

I'm not sure how similar migraine lesions look in comparison to MS lesions, but I think MS lesions usually are a certain size and shape, and are in particular locations, as a rule.

If so, how do you recognize a "flare"? What am I actually looking for or waiting to have happen?

I'm not an expert on relapses (I have progressive MS which is slow, steady progression), but this info from the National MS Society, "Recognizing Multiple Sclerosis Relapses", might be helpful:

http://www.nationalmssociety.org/Nat...er-11-2013.pdf

Or this, also from the NMSS, called "Relapse Management":

http://www.nationalmssociety.org/For...pse-Management

It appears that you are in limbo, for now. I understand your frustration.

Also wondering, do migraines cause bladder incontinence or abnormal evoked potentials? I would ask your neuro these things.

Take Care