I understand your frustrations. I was in Limboland for several years.. Only tiny scattered lesions on brain MRIs the Neuros dismissed althou my leg dragged, no balance, 100 sensory symptoms, could no longer work... test after test.. My LP was normal, all bloodwork normal... I finally got copies of my MRIs and found a doctor who spent time looking at the MRIs(comparing them) and with my history of symptoms was able to Dx me last year. Within that time, I've had several relapses and am now trying my 2nd treatment. You're not alone ! It's a long, tiring process and YES I wanted to hear someone say you have MS ! It was a relief b/c I knew I had it and the doctors did too they just didn't wanna make the call b/c it was perfect for that stupid McDonald Criteria -- Being in Limboland is much worse than knowing the truth and dealing with it as it comes.. Stay strong and let us know if you get an apt @ Mayo..

Jessica-you go girl!!!!!!!!!!!! So glad you aksed for a referral elsewhere.Please keep everyone posted and let us know about this process.I know I should know this, but is Mayo in NY- I could google it , but would rather ask you.By now you have your lsit of symptoms in your head and probably written down-, but make a nice new lsit for your Mayo neuro and put it in those plastic sheet protector those clear ones and take it with you-one copy for you-one for Mayo-once you have referral- check and see what all records go with you and ask if you are hand carrying or will they go befoe you.Hell you should have a copy of all your stuff anytway and a DVD?CD of your brain MRI too. I am probably preaching to the choir, but when I went out of state- my neuro here told me I ws be there a day for testing etc-I was only at my out of stte appt for 45 minutes and no tsting.Find out what Mayo will be doing- in fact once you have your date call them yourself-Bless you dear and keep on trucking-old expression-you may be too young to remember it.This is a huge step for you!!!!!!!!!!-Ellen

Thanks! I actually talked to the people at Mayo today (in Rochester, MN) and I won't know for a while if they will/can even offer me an appointment. My neuro office had a message in for a conference call with them. I called them directly because I was concerned they wouldn't get the whole story. My neuro seems entirely uninterested in everything that has happened before this particular neurological incident. I've had multiple xrays, TONS of blood tests and have symptoms that do not necessarily match up with MS. And this has been going on for years. I want all of that info to be available to the the team at Mayo. So I was told to have all of my different docs fax their info. The best they can muster is a note in my files that says "Other Provider Information Available." I will hear back from them in 7-14 days with one of three options.

1) We can offer you an appointment in the next 3 months.
2) We can put you on the waiting list for an appointment in the next 6 months-2 years!!!!!!!!
3) We can decide that we have nothing further to offer and not give you an appointment.

I also had a request in to the local MS expert here in Iowa. I originally asked for a second opinion but I guess the neurologists do not like to give a second opinion on other local neurologists so they won't accept me until I have definitive diagnosis.

I know that my neuro sees patients who are much worse off than I am but I hate feeling like I am a waste of his time. I went in to see him about my constant facial twitching (one of my eyes is now half closed and my mouth is pulled up in the corner, it's not a spasm. It's constant.) and he was all, "Yeah. That's a blepharospasm. It's benign and will go away on it's own." Ok. Well. A) I'm not a doctor and even I know this is not a blepharospasm. B) It's on the same side of my face that palsied out two weeks ago. How is it benign? I have to say, he's not my favorite. Bedside manner is lacking but he is literally my only option right now.

It does help to know that others have been through this endlessly frustrating experience (although I would never wish it on anyone). I will definitely keep you all up to date on how this plays out!

Please keep us posted and these symptoms that doctors dismiss can drive us crazy.. things I've experienced: muscle twitches, buzzing feet, feeling like ants are biting ankles, like someone placed ice packs on my back, drips of water running down your scalp, itching in one spot non stop, volts of electricity shooting through body, numbness.. these kinds of things doctors find harmless.... sensory related-- but they affect us daily b/c often it happens when we're trying to rest.. Keep a detailed journal of daily symptoms and I know it's difficult getting all records together or faxed but stay on top of it and hopefully you'll get into Mayo soon.

My husband is SO IMPATIENT!!! I told him about my conversation with Mayo yesterday and he decided to devise a backup plan. He called the Cleveland Clinic and, if Mayo doesn't get back to me in a timely fashion, I will be headed to Cleveland for an evaluation on November 5th. I've been reading a lot about MS and it sounds like the earlier you can be diagnosed and start treatment, the better your prognosis. So our goal is to find out what is wrong with me or find somewhere with the guts to start me on a treatment regime. Thanks again for your responses. You never know, until you're really sick, how much faith we put in the hands of doctors and how easily they can take that faith and CRUSH IT! ;) I always thought they knew everything and now I know that's just not true. Talking to my mom last night and she said that it sounds like my current neurologist just doesn't know what's going on and is afraid to admit it.

What a wonderful and loving husband you have ! He's like my hubby- gets things done! I've battled with Doctors offices for days over silly stuff and them not doing their jobs- he'll make one call and labs are faxed to our friends office here by my house !!! lol... so Kudos to him for a back up plan. Lets just pray you get a positive call from either- Yes, the sooner you begin treatment, the better.

While I have no first hand knowledge, I've hard that Cleveland Clinic is very good. Hope that helps. I hope you get real answers real soon.

This infortmation about the Mayo clinic is interesting to me. Very reputable clinic. It takes a million years, how long really?
Can you be refered by yor GP?

Yes, let us know.

Ok. Not a million years. Maybe I exaggerated a bit. My GP has sent my information, my Neuro has referred me for an appointment. I will hear back from Mayo in 7-14 business days with further info. Either they can offer me an appointment in the next 3 months (this would be considered "immediate"). They can offer me a spot on the waiting list which means an appointment in the next 6 months-2 years. Or they can say that they have nothing further to offer and not give me an appointment. The lady I talked to said that they receive 600-800 calls a day from people requesting appointments. I don't know that I want to wait that long, even if it's only 2 or 3 months. I want a second opinion soon.

On the other hand, The Cleveland Clinic (http://my.clevelandclinic.org/neurological_institute/default.aspx) was insanely helpful and accommodating. My husband called them on Tuesday and they asked if we could be there on Wednesday. We said no, that's a bit too soon. We have young kids and need to arrange for care and stuff. So we set up the appointment for November 5th. They don't require medical records prior to the appt. They just said to bring my MRI DVDS and all of my test results. I think that's probably where we'll end up.

Hope it works out with the Mayo. Both myself and my neuro tried to get me to see them a few years back. Both of us got ignored. You would think they would at least say get lost.