MS Diagnosis

by Ronda Roaderick
(Summerville, GA)

Hi, my name is Ronda.


I developed Optic Neuritis in may 2011. I was admitted to the hospital and had so many tests. I had MRI of brain & then one of spinal cord b/c the 1st MRI showed a lesion on my brain. The 2nd MRI showed another lesion on my spinal cord.

I do have balance, coordination, & brain fog at times and also "word finding" issues. I was diagnosed with Fibromyalgia about 10 yrs ago. (I think now that it was NOT Fibro).

I am a 49 yr. old female. Two yrs. ago I could tolerate 6-8 hours working in the yard in the summer. I no longer tolerate even an hour.

My Neuro seems to be so hesitant to give me a solid diagnosis. I feel that I've had episodes for yrs. I've even gotten to where it hurts so bad to stand or walk. My feet sometimes feel as someone has put a heating pad on my feet - (mostly evening & night). I have very extreme fatigue.

They tried Nuvigil and it had no effect. My EEG showed slowing bi-temporal lobe. I know that the MS treatments are very serious meds with very serious risks. Could it be that my neuro is afraid to tell me yes or no on the MS diagnosis?

PLZ give me your input. I have dizziness a good bit. I've already fallen since out of hospital. I thought I had slipped in something. (I was barefoot in my kitchen). When I looked to see what I slipped in, there was nothing there.

It has been 3 months since Optic Neuritis started and I still do not have sight back. IV steroids would speed recovery, but they will not do that because I do not have a solid diagnosis of MS.

Oh, I did have spinal tap and it came back good. I feel in my gut that this is MS. I know how my body has felt in the past. I have become so fatigued that daily activities are difficult. Especially since my Optic Neuritis, but I been feeling more fatigue in the past 2 yrs.

I am now on Lamicital XR, I guess b/c of the EEG result.

PLZ, I need your input.

THANK YOU

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Aug 10, 2011
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Second Opinion?
by: Akrista

Hi Ronda,
I think I understand your need for a diagnosis "now" rather than later. You are not alone when it comes to being frustrated with what the doctor says and what you know you're feeling.

Please realize that we are not professionals when it comes to what your symptoms mean. Our answers here are just our opinion based on what we have seen and lived with over the years.

In answer to your concerns, because MS is so different for each person, a diagnosis doesn't always come easily and quickly. Many neurologists hesitate to just say that you have MS because some of the symptoms could point to something totally different. The best neurologists will eliminate all other possibilities before giving you a definite diagnosis.

Even if 50% of your symptoms point to MS, the other 50% may be questionable in their eyes. And saddling someone with a diagnosis of MS for the rest of their life - to them - may seem cruel, especially if it does turn out to be something else.

You, on the other hand, want and need answers. Living with a disease like MS is so uncertain, already. To be living with it and not know for certain that you are, must be even more frustrating.

You may feel that time is of the essence when it comes to treatment. Whether it's the multiple sclerosis medications available, or alternative treatments you could try. Give you an answer so that you can begin treatment.

Reading all the symptoms you have, from optic neuritis, to extreme fatigue, to balance issues, and even the lesions on your brain and spinal cord, an MS diagnosis seems obvious. But your neurologist is the doctor.

If anything, maybe getting a second opinion might be in order. He or she may be open to letting someone more experienced in dealing with multiple sclerosis take a look at your charts. Or you can take the initiative and search for someone else. Maybe there is an MS clinic in your area. Try there.

I've known of a couple people who have been given a diagnosis of MS and it turned out to be something else. Imagine being told that you had MS and all the people you knew who had multiple sclerosis were severely disabled and in a wheelchair. Emotionally that could be devastating. I can kind of understand why your neuro is waiting to be absolutely sure.

I know how you on the other hand, need to know now. For you, it will be a relief to finally be diagnosed. You can get the treatment you feel you need. You can stop wondering why you have the symptoms you do. You can begin living with and managing your MS instead of waking up wondering what may go wrong today and not being able to do anything about it.

If you can, be patient with your neurologist, and if you can't, get a second opinion.




Aug 11, 2011
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Re; MS DIAGNOSIS
by: Ronda

THANK YOU SO MUCH for understanding my frustrations. It helps to know that ppl know how I am feeling. I think they have ruled out most everything else with tests.

THANK YOU AGAIN!!
Ronda

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