Over thirty years after my first teenaged symptoms until dx. Dx came when I had eye problems (double vision, scotoma, visual fields, etc.) plus MRI showing demyelinzation.
However, then later I was dx'd with Porphyria, which can produce some similar symptoms. At this time, I am in permanent limboland, not even trying to change it. Don't go to a neuro any more. I have neurological damage and some new symptoms due to newest disease, Polycythemia Vera, which can cause vision problems too due to "thick blood."
I figure I have a form of MS which may be related to Porphyria....I know from extensive reading here that MS takes MANY courses, many forms. Even a positive dx will not
necessarily be the end of the diagnostic journey, nor the experiments in how to treat,
etc.

My best treatment has been the Swank lowfat diet. Hard to stick to now as I am in a
"facility" recovering from a broken knee caused by falling down due to numb feet. It's getting harder with old age. A long trip from 17 to 79.

Me too! I was seeing the neuro for the first time (neuro #2 of 2... thankfully I only had 1 bum doc!) after my ENT doc sent the city hospital my MRI findings from his research, and I insisted on an MRI and he agreed and sent me for one.

I remember the kind hospital nurses took in this pale, skinny, nervous wreck of a girl who hadn't slept in days and put her on the Solu Medrol drip. I didn't know what the heck was going on!.. all I knew is I could taste pennies, and I had to do this for 6 days 3.5 hours each time (eeeesh!).

During this, 11 vials of blood drawn, spinal tap (lumbar puncture), question and answer session and assessment of cognitive/motor skills.

For me, the blood drawn and the spinal headache following the LP (bad, bad Laura for cleaning house 4 hours after getting home!!) were the worst parts, other than the limbo of waiting on the results!

Ok tangent, sorry! Just sharing my experience and went off a bit there lol!

From my initial 'searching' to find answers? 2 years. I had to be 110% proactive, contacting doctors myself and doing a lot of my own research and begging for help. I had to listen to a lot of condescending "Aww, poor woman!" responses from doctors, or the 'stress' excuse.

I hope you can get your answers without too much hassle and leg work.

^^~~ Yes!!!

It took about five months for me.

wow.... It sounds like a lot of you have had it come quicker than others with getting dx'd... What is the Swank Diet? How do you find the right doctor? How do you figure out how to find the right doctor?

In my case: I went to my PCP and he said he could not help me and I would need to see a Neurologist. My PCP gave me a referral to a neuro and I have been with the same neuro for 25 years.

Coffeegirl, as I said I was in the middle of a severe exacerbation and it was extremely obvious something was wrong.

It's not only about the neuro but what your testing and exam shows.

3 years for a dx, well at least a correct one, and the last year and a half me telling them what I had and trying to get a doctor to listen.

Hi coffeegirl,
It took three years for me to get a DX and I had symptoms the PCP and Neuro could see. It was not the "Classic presentation" of MS and No MRI's back then.

They tried many meds, then I was in the hospital for a week. They said you have MS. Maybe had it since 16 years old they said, but I am not counting that time. Just the three years or testing, testing, testing.

I think when I had flares in areas show up in so many different places, that correlated to my brain ( with my symptoms) it fit the "time and space" criteria to get a dx. All of this I never knew at the time. I didn't even know what MS was.

I had my first very clear MS symptoms when I was thirteen (facial pain, numbness in legs, “charlyhorse” so severe that I couldn’t walk). I was told I was faking. Yadda, yadda, yadda, at age 59 I was diagnosed with MS. My first question to the doctor after being diagnosed was, “So I’m not faking?” It was a nightmare.

I am heading to Mayo next week and hoping that they might have answers. If so, it will have been almost 6 mths. I understand your waiting, worrying, and wondering. hang in there.

I bugged doctors, finally my ear nose throat guy, finding nothing else wrong, sent me for the MRI, and when those results came in, he sent me to a neuro with a clue !

Swank Diet is a low-fat diet, which some believe is highly beneficial for those with MS. I've ate a low-fat (under 15 g daily of Saturated and Trans Fats), no red meat Swank-version diet that I just came up with myself, and I've been following that for over 2 years now.

There's a lot of literature out there about the actual Swank Diet, local library or Internets have Swank Diet info.