Okay so here's what I have effecting me now & some about me too...
I am 41 & had an episode back in '08 that was never truly diagnosed..
One Dr. said it was a TIA & another said possible MS. I am so confused & frustrates I have no idea where to go now.
I had an MRI that showed alot of White areas that show a dymeliating process that was also said could not rule out MS.
Later I had a BAER(negative) & a VEP(also Negative) Had a spinal tap(Dr. said negative too)
But I have a B-12 deficentcy.
I am getting more & more clumsy & stubling into the wall or such.
Lots of facial & head tingling(Alsmost all the time now).
I sometimes get things in my head when I am lying down mostly like a BIG Flash of lightning in my head(I know its in my head. But scares the crap out of me).Sometimes it can just happen when I blink.
I have severe migranes. I had a migane all day on Friday & into Saturday. Then I finally dozed off for about an hour then had an ER visit this past early Sunday(about 1:30am) due to it waking me up from a dead sleep with a pain to my right eye that I was thinking tearing it out would be a better feeling.
Well went to a Neurosurgeon on Monday(7/30) for my neck problems. I have up to 4 bad spots in my neck. But the NeuroS said he wouldn't operate due to him saying it would not help me at all. I asked how about the pain? And he said he could not fix that. My wife & I both looked at each other & knew we were going to another Neuro ASAP! I asked about the "Facial & head tingling" he said I don't know why or what's causing thatat all.
I thought man this guy is a complete Jerk big time now...
I do have lots of fatigue & other small symptoms of MS but I have not found a local Neuro doctor that will say conclusively anything. I have had 2 primary physians over the last 4-6 years & they definitly think MS. But the specialists the 2 that I have seen are just looking at their checklist & if I don't have a certain one or omit one they just say I don't know or just think I am just plain Wack O. I am just ready to strangle them both!
I know I might just seem to be looking for a specific diagnosis. But I am not at all. I just keep a diary of things that are happening me from day to day & then about every 3 months or so I add them all up & catorgize them & alot is adding up to MS. Although not real severe. But enough to truly worry me.
I truly hate it that there is such a long list & that a neurosurgeon puts MS so far down a list that by the time a person is classified as MS 5-8 years are gone... My brother was called nuts,depressed,alcoholic,druggie... And several other things for years before he was truly diagnosed with his MS down in Vanderbuilt.
I think if a doctor hadn't said he has fibromyalgia that he could have had a way earlier jump on his condition by about 3 years or more & that just ticks me off that a Neuro Doc has his set in concrete list.


I do have a brother that has MS & is rapidly spirally down. Over the last 3 years or so he has become paralyzed completely on one side,blind in both eyes & other majors symptoms. He was the big time football star & such back in school. Man he was great. I remember I wish I was just a 1/4 of the athlete or singer he is.
Talk about brother envy...Man I had it.

I am just wondering what others had to go through on their journey of MS.\
If they were just surprised by it, or had a good feeling that they knew what it was.
Any input for me would be great.

Welcome to NT...great place for info & hugs...

I started with a numb toe in '05. EMG showed nerve conduction wasn't great. MRI showed lesions but neuro said "not in the right place" for MS. He gave me migraine meds thinking it was that-even tho I never had a migraine.

Symptoms got worse...stumbling into walls, spasticity, bladder probs, cog fog. The neuro really didn't do much for me. He dropped my insurance, so then he sent me to an MS specialist. She looked over the MRI, noticed I had fibromyalgia, and declared that was the reason for the probs.

So about 5 months after that, my symptoms got worse. I found another neuron that was recommended by friends. He said "hmmm maybe MS but lesions aren't in right spot. We'll watch you."
A year later, my legs locked. "okay, probable MS". Put me on cop axone & monthly infusions of solumedrol-then let his nurse practitioner take my case. I was unhappy with her way of minimizing my symptoms. So someone on this forum recommended her neuro. He said that I have a benign case of MS, but watches me & treats the symptoms seriously. He is kind, spends lots of time with me during appointment, and I feel, for the most part, that I am in good hands.
I try to keep a symptom journal, eat right(most of the time), and exercise, including stretching. This disease can sneak up on you...so respect it, but try not to let the symptoms take over your life.
As others have posted in the past, there are many diseases that mimic MS. It's a matter of exclusion...

Hi Roadiez, good to have you join us. I found that going to see the Neuro, with no pre conceived notion as to the Disease you may have, is a much better way to approach. I think that he/she will be more open to work on and DX your symptoms.

Let us know how it goes along your road of ruling out all other illness, until nothing is left but MS.

My dx hit me out of left field. I never heard of MS before, and was clueless as to what it was. There are so many illness that mimic MS, it can take along time sometimes to dx. I was dx after sx check and MRI. My LP was negative, but everything else pointed to MS. I then went on my MS rollercoaster with neuro's. I saw no less than 10 different neuro's, none of them MS specialists, and they all had a different opinion. One thought I suffered from depression, another thought I suffered from migraines and called it migraine neuralgia, another one thought I was fine and all my sx were just in my head . I did have 3 that agreed I had MS. I did this roller coaster for about 5 years and then gave up. I wound up in the ER with sz's one day in 2002, and the MRI showed the MS lesions and my new neuro immediately put me on a dmd and some sz meds. Fast forward to October of last year, I had a bad flare and then had another bad flare in December. My new neuro wanted another LP to be done, so I did it and it had those nice little o-bands of MS. I was then sent to a MS specialist, and Im now on my second dmd, and although Im disabled now, I feel Im doing good otherwise. The journey can be a p.i.a., but worth the fight. Never give up. You are your best advocate. Take care.

I suggest actually contacting the closest or nearest best MS center you can, and make an appointment. Many neuros see reluctant to find for MS. I saw two who diagnosed peripheral neuropathy before my MS center doc said that was a misdiagnosis. However, he has diagnosed me with transverse myelitis so far, as no actual lesions have shown up yet. We repeat MRIs this fall to see if there are changes. My symptoms have not been typical TM, and are progressively getting worse. I never feel I have anything resembling remission. That said, I am glad I saw an MS specialist (he is a TM specialist as well).

Isn't it funny how the Peeps, before MRIs, were DXed sooner than after the MRI came along? Have Neuros gotten lazier or just saving their own butts, in case they're wrong.

I know one thing, they don't like the fact that, because of all the knowledge attainable on the Internet, we are so much more educated and wise.