Trip to the Mayo

So I went to Mayo yesterday around 645 am. Didn’t know what to expect being a guest. The nurse placed me in a room and told me a girl would be coming to take pictures of me. The next lady came in with her camera with a huge lense it was a little weird lol. She took pictures of all the areas that are effected buy EM. Next began the large group of doctors coming in 6 to 7 at a time looking at me and asking me questions and looking at all the pictures i brought with me of all the different flare episodes that i have had over the years. They came in and out for 30 mins in these large groups i felt a bit strange and nervous like i was on display, but kept thinking if it can help me or others like us than it’s worth it. Afterwards i went back to my dermatologist office and she came a little after because they all sat down together to talk about me and what they think will help and things to try. Basiclly they said try gabaphentin which she told them i was already on, then they said instead of 80mg of aspirin to cut it into half. She mentioned another pill amlodipine a calcium channel blcocker but it is in the same class as nifedipine i told her that when the pcp gave me the nifediphine it sent me to the ER i was burning from head to toe. She said we diffinatly wnt be trying that then. So for now im on the aspirin, Effexor, gabaphentin and a compound cream.

I will be on this for the next 2 months and then will return to the derm to see if anything is helping. I dnt really think any of the Mayo dr really knew what to do either since its so rare most of them looked at me like i was the first person they had scene with it. So for now i guess i just try this and read and try to gain my own knowledge about what may help from others like us that have found some relief.

Stay Cool

thx so much for sharing about your visit. It’s not easy probably to be scrutinized like that with cameras and everything like you’re such a novelty lol. I am surprised they didn’t throw in something like lyrica or mexiletine … or maybe a beta blocker. But i hope you get relief from the compound cream (is it ketamine/amitriptyline?). That seems like Mayo’s go-to prescription for this (?)

hope you get some relief one way or another soon.

Ya she said Lyrica but my insurance wnt cover it unless i try everything else first. So maybe if nothing is helping when i go back i will be able to switch to that instead of the gabapentin. ya that’s the cream lol, not very hopeful that it will work cause i know others have tried this and had no luck. Guess were like genuie pigs they just throw suff at us to try and hope something eventually works. Gonna be spending a lot of time in doors over the next months it’s so hot already today was 101.

Stay Cool

Dear Momma,
I too have EM. I basically diagnosed myself as doctors were baffled.
I have MS and Raynaud’s plus a few autoimmune issues or conditions. My neurologist asked me to do further research as he didn’t have the time.
He he did tell me he thought my EM was due to the MS because of possible autonomic nervous system involvement. which is part of the central nervous system. I’m not sure he is right I think it is RAYNAUD’S related.
I take 800 or 900mgs gabapentin (400 twice daily) and a full dose aspirin 325mgs but only the enteric which means the coated with my dinner along with my vitamins and supplements. I was already on the gabapentin but the dosage was less. This this combo has given me relief. I hope this helps you. Good luck!