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

General
1

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?

Thanks,

Amy

2

Amy, how did your appointment go?

3

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!

4

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?

5

Hi,

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.

Amy

6

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.