Has Anyone ever been there before?

I'm new on here, but have been reading posts for a couple of weeks now. I am heading to Mayo next week in Rochester, MN. I am undiagnosed after five months of complete chaos. I am walking very weird, have periodic seizures (but managed on Keppra), pulsing nerve pain in my back, thighs, arms; tremors, headaches, vision issues....it all started with the worst headache of my life five mths ago...Brain MRI/Brain MRA and LP all negative 5 mths ago. Have had no tests since, but have been in agressive PT..that has helped, but relapsed last month. I will let you know how it goes.

Hi B1 and Welcome to our NT group! It's good to meet you. If you've been reading here for awhile, you know that quite a few have taken a long time to get a diagnosis. Like everything else with MS, the diagnosis process isn't the same for all either.

Best of luck at Mayo and please do let us know how your appointment went!

Hi butter1 welcome!

Sorry coffeegirl, I have only experienced the NEw England healthcare system.

Welcome Butter1!

CoffeeGirl, I had an appt there before my diagnosis but cancelled it when I found my wonderful neuro in the Northern Chicago suburbs. He was trained at Mayo so I feel like I got the best of both worlds since he is near enough to be my regular neuro for my 3-4 times a year that I have appts. If you're near that area let me know and I'll give you his name and office number.

Coffeegirl, I haven't been to Mayo, sorry. I wish lots of good luck when /or if your plan on going there. Do you have an appointment yet? Maybe Ewizabeth's doctor can help you?

butter1, Welcome to NT. Nice to meet you. It is hard to get a dx unless you have the "Classic symptoms" to a disease. Most times it's just a rule this in or rule this out, and lots of testing. Sorry to hear about all your symptoms. We all want/need to know what is wrong with us, when we don't feel well.

No one wants to get the wrong dx. They have to be sure. Good luck going to Mayo to you too.

Let us know how you both make out there and give us an update if you can. Bring all your tests, MRI's, blood work, Medication lists, and notes that you might have, with you when you go. All this saves time.

Is Cleveland Clinic in Ohio, or a NYC teaching hospital/ clinic a place you might want go? The University of Penn. is supposed to be good too.

Any teaching hospital or Clinic is good because they have so many different doctors. The more eyes and ears the better.

Thank you everyone for the support and info! I'll keep the Chicago doc in mind if things don't start to get going. Thank you!!

Glad to be here. Not sure if I belong here but it is just nice to chat to others who make me feel welcome somewhere! I'm in the land of wanders right now....

Hugs

coffeegirl

thanks to you all for the welcome...I'll keep you all updated on my experiences with Mayo. Am excited, scared and anxious all at once.

butter1

Good luck with the Mayo Clinic Butter! So glad to hear you got in so quickly!!! That is awesome. I know how long the wait is in to get into that clinic- very long. You are so fortunate. Best wishes when you get there. Did they say how long you will be there for tests, etc?

I did a search about neurology centers in the US. Mayo Clinic in MN is the top neurology clinic in the US. Glad you are going there. Not that any other clinics aren't- it is just where the newest tests are studied at for neurology in the US. I hope they are able to help you feel better.

Please keep in touch. Take care!

Coffeegirl

Is this normal?

Felt sick entire day- woke up this way felt the same way all day until bedtime. Right before bedtime I was standing up and fell down to my feet; just dropped to the floor. Felt so out of it and nauseated/light headed (not dizzy). Head felt very weird. Felt like my head was going in/out. Did not feel right at all.

Is this an MS Symptom?