Did anyone need to wean off meds before going to Mayo?

Good Afternoon,

I have a Mayo Clinic appointment on 6/9/16 and they want me to be off of my meds for 2-3 days.

It seems like lyrica, and my cytotec need to be stopped for 2-3 days.

I take 75mg of lyrica TID and 200micrograms of cytotec TID.

I have a call into my doctor for guidance.

I understand why I need to do this, but I am not at all looking forward to it.

Anyone have to do this?



Amy, how did your appointment go?

Hi, my appointment consisted of lots of tests without any answers or suggestions. They would not render me an EM diagnosis. I did wean off all meds before my appointments. Doing that was actually ok.
I’m now working on getting into Hopkins.
I want a skin punch biopsy of my toes and thighs.
My thighs burn!

Did you go to the Mayo Clinic in MN? Dr. Davis?

I am on a waiting list for a year to see him !

I am convinced that no answers will come out of that appointment just you have EM which I already know.

John Hopkins in Maryland doesn’t handle EM patients.

I am curious why did they not render an EM diagnosis for you? What was the testing? When I talked to them on the phone they said sometimes its not EM. They asked for pictures of it and I sent it. I said all you have to do is put me near a heater and you will see for yourself. I can get EM to trigger very easily. Did they give you insight as to what they think it is then?


I did not see Dr. Davis. I did see 2 other derms and a neurologist.

The derms did see my pic of red toes, but said they would not “render me a diagnosis”.

I have no idea why. I do not turn red near heat in fact I have been wearing socks and UGG boots lately to keep my feet warm.

Who knows why .

My local derm said its EM. Of course I taught him about EM and when he first saw my pics he said “no way”.

John’s Hopkins does see EM.

I am going to see Dr. Alhariri at JH who is a derm and has treated a few EM patients.

I am stable right now - aspirin and cytotec .

I’m going to see the doc anyway to see what he suggests

Mayo did not give me any advice other than to see my local doctor about meds.

I had the sweat test, EMG, Qsart, Qst - all considered normal.

Essentially, Mayo thinks the majority of EM (85-90% is caused by small fiber neuropathy.

They said I don’t have any neuropathy and they think its a possibility that my pain could be coming from my CNS.

Make so sense to me though. Can my CNS trigger my toes to turn red at times?

I am sick of all of the tests and docs - I’m just ready to go on with my life.

Have you tried aspirin or cytotec?

I take 325mg aspirin at 4 and 8 pm.

When do you head to Mayo?

Get off all of the meds that prevent you from sweating for 5-7 days before the tests.


Hi there

Yes definitely keep at getting answers. Regardless of what it’s called its not normal. I hope that you can find more answers about this. I am on a waiting list for mayo and I’m told it could take up to a year for an appointment.

I’m pursuing Cleveland C Kiki now.