Were you initially told that you DIDN'T have MS?

How common is it to get the run-around for months or years (with clean MRI & other test results) before eventually being diagnosed with MS after all?

I am a 24-year-old female.  I've had MS-like symptoms since Feb 25 of this year.  It was worst in April and May (dizziness, numbness, brain fog, stiffness, severely blurry vision, ringing in my ears, debilitating fatigue, elevated heart rate, insomnia, headaches, panic attacks, and some weirder ones).  I had an MRI of the brain and spine, evoked potentials, and a bunch of other random tests (mostly heart and blood related).  I was told everything was normal, and accused of "anxiety."

By June I had started feeling much better.  A neurologist then told me I had "post viral syndrome" and would be completely cured by August.  (He also said "I don't believe you had an optic neuritis")

I got somewhat worse again in July, then better in August through October, and have been slightly worse again this month.  Even so, my symptoms are only a tiny shadow of what they were in the spring -- now it's just blurry vision, mild hand stiffness, and slightly reduced sensation on my back.  Occasionally I'll have a muscle twitch, tingle, or heart palpitation.  But I never have brain fog or dizziness anymore, my energy is normal, and I can run six miles!  My vision is just bad enough to make me nervous and annoyed, but good enough to drive and (usually) read the computer screen without a problem.  I take magnesium, b complex, b12, c, and probiotics religiously, and avoid sugary foods.

Anyway, does this sound like the beginning of an MS story?  What were your experiences of waiting to be diagnosed?  How much time between first symptoms and diagnosis?  How many of you had normal MRIs the first time?  Were you told that you DIDN'T have MS only to be diagnosed with it later?  Were you given diagnoses of "anxiety" or "post viral syndrome"?

I know that mystery MS-like illnesses are common, but none of the people who post about them stick around to tell what eventually happened...tell me your stories!

-Becky

[Sumanadevii]

We have plenty of people on this board that have been searching or searched for years that were told there was nothing wrong with them.  Most had little show on an MRI (just one or two lesions) and some had none.

We recently had a member with no lesions finally given a dx of MS.  

Many members have been told it is anxiety, streconversiontion disorder, etc.  For some it was true.  For others their bodies told them otherwise.

Only you can decide if you wapursuepersue it future.  Does the dx matchsymptomsymtoms?  Sounds to me that you are doing rather well with running and maybe it could be anxiety causing it.  

If not, there is always a second opinion.

[Sumanadevii]

that should be if you want to pursue it further....

[tired_of_mystery_illness]

Thanks for responding!  I do notice that my symptoms get worse following stress / depression.  It also gets worse if I skip exercising, eat candy, or miss a dose of magnesium (of course no one believes me about that).  It just worries me b/c that doesn't happen to normal people!  Normal people can feel stressed without ruining their vision for a week, or making their legs stiff.  It doesn't make any sense.

In early July, I met my friend's dad who has had MS for 16 years...he is in pretty bad shape...meeting him (and watching the way his family interacted with him - like he was only half there) filled me with such a potent mix of fear, anguish, and desperate sympathy that I was disturbed for days.  My symptoms got worse for a whole month following that.

It seems like all the time I am hearing about more second-degree acquaintances with MS.

Anyway, I'm seeing another neuro in a month...hopefully they will let me have another MRI so I can see if anything has changed since April.

[Mike_Shuswap]

I was actually pretty pleased when I was dx'd with MS.

At one point I was told I had an inoperrable (sp) tumor in the middle of my brain that was causing all my problems. I had a brain biopsy that determined I had a demylinating, MS type of disease.

A year or so later I was dx'd w MS.

I never had a clear MRI, but my lesions are not the common MS type of lesions, whatever that means.

There are a lot of things that can cause neurological problems. You need to do exactly what you're doing, get help/advise from your Doctors. hopefuly you don't have MS, or any other illness or disease, but if you do you do, and you'll find a way to deal with it...

Take care...Mike

[kerrtelli]

I was originally told not to worry about nothing and my MRI has lesions.
Five years later, more lesions, another episode, told not ms.
Six months later, a whopper of an episode, finally told i have ms because the neuro I saw was not a blind fool.

Keep the faith and follow your gut.

Kerri