Someone help me understand

[Blakesmommy0907]

I started having symptoms 3/31/13 with vision loss in my left eye only that lasted about 20 minutes, dizziness, lightheadedness, and overall weakness and fatigue. The next day I continued to have dizziness that comes and goes, along with extreme fatigue and left arm pain/weakness.

I have had only one MRI (just a general one ordered by my primary care dr.) of my brain and it was almost a week after it all began. The MRI showed two 'white matter flares' or 'flares of hyper intensity' depending on which dr I spoke to. (Neuro said they were within the region they see for MS patients, but that didn't mean I had MS.)

These symptoms were pretty bad for two weeks, then got better, as in, not as bad. I still was having dizziness, it was just not as severe. My left arm was so weak for those two weeks I had a hard time writing at all (I am a lefty) or even picking up my purse.


It took a few weeks, but once I finally saw the neuro for the first time he asked me a lot of questions and ordered a lot of things for me to have done, including opthalmalogist (no evidence of ON 4 weeks after vision loss), cardiologist (they found I have a PFO that is apparently unrelated), VEP (normal), balance institute testing (it is coming from within my CNS), and I just had a LP done and apparently e


verything came back from that as normal, just found that out today.
I haven't had a single day since this all started that I have felt normal. I have dizziness that comes and goes everyday. I now have lots of pain & twitching all over, sometimes tingling. I have a hard time focusing on things and my memory is crap.


The dr talked to my husband today and basially told hubby that we could 'cross two big things off our list', meaning I DON'T have cancer and I DON'T have MS. I am a bit confused, since I know it is possible to have a negative LP and still have MS. I have to call tomorrow to schedule a follow up with neuro, but I feel like he is going to tell me He doesn't know what is wrong and leave it at that. Also, I have not had an MRI with contrast, or of my spine. Should I ask, or request to have this done?


I just have had so much done and no one can help me or do anything for me because no one knows what is wrong. I just want some answers.




** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[22cyclist]

I am sorry you are having a hard time. There are two phases of things I would like to say to you. The first is not so concerning, the second is more concerning.

You can have areas of hyperintensities without having lesions. These were not counted as lesions. Also you didn't need contrast because the FLAIR sequence picks up hyperintensities without needing contrast. Contrast only shows if lesions are active.

What your neurologist is saying is that you have hyperintense areas in the white matter where MS could be but not lesions. These are different things. This is why he knows you do not have MS at this time.

With your vision loss: MS vision loss with ON lasts days to months, not minutes. So you did not have ON.

You weakness though, is concerning, and I would ask for a spinal MRI, you don't particularly need contrast, but ask for one with and without if you want one per MS protocol because of the arm weakness and how long it has lasted.

That symptom is the most worrisome and could be coming from a cervical lesion. If he refuses, look for an MS specialist that will see you. Forget about the vision issue, they will dismiss that, or anything that didn't last more that 24 hours and was constant.

Good luck and let us know how it goes.

[mjan]

First of all, I am sorry for all you are going through. Yes, this can be disconcerting and frustrating. But know that you can have neurological symptoms and signs caused by other things as well.

Not sure if your doctor did an extensive work up to rule out the MS mimics or other neuro type disorders, including chemicals we eat or drink. Heavy metal toxicities, aspartame or sugar substitutes, things like that.

So, as hard as this is on you emotionally, there will be answers, but may take awhile to figure this all out. You wouldn't want a doctor to diagnose you without meeting the McDonald criteria. Trust me, I know..been there.

Keep us informed as to how you are doing.

Sending you hugs to you and yours~ Jan

[Blakesmommy0907]

Thanks

Thanks for the replies. I am just so irritated that no one can figure out what is going on. I am starting to feel like everyone thinks I am nuts and I AM NOT NUTS!

I just want to know what is going on so that I may be able to deal with it and maybe find a way to get some relief from my symptoms. Something is obviously wrong and I am just frustrated that it has been going on for 3 months with no relief or answers in sight.

Thanks for letting me vent.